information – little thoughts

POTS: adding another diagnosis to the stack

Posted on 2020-08-23 by kristinabean

Shortly after things closed down for the pandemic back in March, I was biking on the stationary bike in the garage (since I was no longer biking to commute to work, since I was now working from home) when I started feeling very lightheaded, shaky, and queasy. It was similar to, though more severe than, the times I’ve had low blood sugar events, so I decided to eat something and rest; I don’t think the eating helped very much, but the rest certainly did.

I would have written this off as dehydration, not eating enough, biking at too high of an intensity, or so on if it hadn’t initiated chronic lightheadedness, dizziness, and fatigue. On good days, I would get a rush of lightheadedness when standing up; on bad days I would have lightheadedness just from sitting upright, reading aloud, or singing, and fatigue from just walking around the house interacting with the kids. But I could always just argue that it was one or two bad days, and that it isn’t that abnormal to get dizzy when standing up. Maybe it was just the hot weather arriving and I needed to drink more water… but I didn’t seem dehydrated otherwise.

My family finally convinced me to see a doctor after this had continued for just over a month, and because my EKG at the primary care office had an abnormality (and all my lab work was normal), I ended up seeing a cardiologist who ran a variety of tests and diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTS for short).

I’d never heard of it before, so I’m guessing most of you probably haven’t either. Here’s how it works (in abbreviated terms!). Normally, when a person stands, the brain triggers the autonomic nervous system to constrict blood vessels in the lower part of their body to help blood return to the heart, and at the same time tells the heart to beat faster to help pump that blood against gravity up to the brain. In POTS, the heart beats faster like it should, but the something goes wrong with the autonomic nervous system and the blood vessels don’t constrict the way they should. The brain, not getting the oxygen it expects, continues to send out ever more frantic messages to the heart and the nerves – and so the heart ends up beating faster and faster since the nerves aren’t responding.

What does that look like for me? Well, on a good day, my heart rate will go from mid 70s when sitting to 100-110 when standing, and stay that high even after the initial rush of lightheadedness passes. On a bad day, it will go up into the 150s just from standing. It makes standing very tiring… cooking a meal for the kids or washing dishes after a meal can be one of the hardest parts of the day because of the time spent just standing in the process. Interestingly, walking can be easier to handle than standing, because the movement of the leg muscles helps push the blood back to the heart despite the lack of assistance from the ANS. In addition to the tachycardia, which is the primary symptom that defines the syndrome, I may have chest pain, lightheadedness, dizziness, fatigue, headaches, nausea, body aches, tingling arms and/or legs, and feelings of clumsiness and/or muscle weakness.

Unfortunately, medicine hasn’t yet determined the cause of POTS or a reliable treatment for it. The primary recommendations are to wear compression socks/stockings (to help push the blood back up), exercise (to strengthen the skeletal muscle that can help push the blood back up), and drinking tons of water and eating lots of salt (to avoid dehydration and also increase overall blood volume). There are also a lot of medications that can be prescribed off-label that help some people, but while my cardiologist prescribed one for me he didn’t realize it was contraindicated by other aspects of my medical history so for now I’m trying to manage with the home remedies.

So, the last few months I’ve been mentally processing this during my free time, instead of spending my extra energy thinking and creating and writing for the blog. It doesn’t help that the amount of extra energy I have has been depleted both by the POTS itself as well as by trying to learn a new dance of pushing toward growth without triggering a crash. In a way, it’s similar to the balancing act of living with autism in a neurotypical world, but with a new set of triggers and symptoms (as well as some overlaps; bad POTS days definitely make me more sensitive to sensory input). But I think I’m finally ready to emerge from this hibernation! I’ll probably write a few more articles about POTS, as this is really just a brief introduction, but I also have so many amazing hikes to tell you about from this summer, and so much learning to share as the kids have started our homeschool program for the year. Thanks for still being here to share this little corner of the Internet with me 🙂

information, sqt

{sqt} – internalized ableism

Posted on 2020-02-13 by kristinabean

I’m joining the quick takes link-up today at This Ain’t The Lyceum with a rather more serious topic than normal. Head over there for the rest of the regular varied line-up.

Disability is innately challenging in various ways (hence the term disability), but it is also socially challenging because the surrounding culture is not designed to accommodate disability, typically misunderstands, and frequently actively stigmatizes it. When a person in a wheelchair can’t navigate safely down the sidewalk because someone left one of those electric rentable scooters lying across the width of it, for example, that is a challenge posed social ignorance and carelessness, not an inherent challenge of the disability. When people assume that a disabled person’s life will be less meaningful, less joyful, or less worthy, just because of the disability, that stigma and misunderstanding add a significant challenge that is not actually part of the disability itself: the burden of proving oneself to the community instead of having one’s potential and value automatically acknowledged. And in the face of that assumption, repeated over and over again, the disabled person may even begin to believe it themselves, in what is called internalized ableism.

I can really only speak for myself and the disability I know well, autism. But for me, internalized ableism is:

…scratching my arms till they bleed because it’s more subtle and socially acceptable than flapping my hands in the air and I really just don’t want anyone to notice that I’m different and struggling here, please. (Just realizing this and giving myself permission to flap and stim in other more obvious ways has reduced my self-injurious stimming a lot, actually.)
…laughing at everything that is probably a joke so that I’m not the clueless person who doesn’t get cultural humor. (I laugh when I’m nervous or overwhelmed too. I hate this. I hate that my emotional responses don’t match up to what they “should” be and I have hated it ever since an adult got angry with me as a kid for laughing in an “inappropriate” setting. Internalized ableism is often learned through emotionally significant childhood events; it often speaks to the heart with cruel, cutting hate.)
…acting like I know things, even if I’m not totally sure, if it seems like everyone else knows already – only admitting ignorance if someone else does, because then I’m not the weird one who might not be worth bothering with.
…believing I can’t serve God in any meaningful way because I’m too anxious to build relationships and share the Gospel with my neighbors/coworkers/homeless people/etc.
…trying to get my kids to act “normal” instead of helping them live fully into the way God made them, disability and all, because I secretly (subconsciously?) think displaying their disability will hurt their chances of friendship, community, inclusion, and happiness.

Limerick standing at the edge of a lake, arms raised mid-flap. I never want him to think he has to stop his excited flapping to fit in and make friends. I never want to cut out his natural and beautiful expression of happiness, and in so doing damage the happiness itself. So why do I try so hard to do that to myself?

…doing everything on my own without asking for help, because I think asking for help for disability-related reasons either means I’m a useless burden on the relationship or lazy and immature and relying on my disability as an excuse.
…assuming that the people I do rely on (particularly my husband, at this season of life) resent me or see me as a burden, or would do so if they understood the reality of my disability. I felt this years before I had a diagnosis: I knew that I was different, that I didn’t process things “normally”; that I had struggles no one else I knew had; and I thought this made me deficient and broken and that anyone who really knew me would stop loving me because it would be too much work. And that is just with Level 1 Autism. I can only imagine how internalized ableism, if not actively combatted, could bring down smothering waves of anxiety and depression on someone whose support needs are higher, either physically or emotionally.

In short – internalized ableism can rob the disabled person of joy, shut down their authentic self-expression, replace their faith and hope with fear and despair, and reduce the blessing and the gift they can be to the communities they are a part of. I don’t have a great solution for eradicating it, and I think it can only be done hand-in-hand with eliminating more generalized ableism in society – disabled people are going to pick up on the attitudes others have towards them, and especially as children can easily internalize those attitudes.

The following chart is, however, a well-written, sensitive, and helpful guide for evaluating your own attitudes toward disability. It’s aimed towards the non-disabled reader, but I honestly found it quite helpful in unearthing my own internalized and self-directed ableism as well.

Where on the chart do you see yourself? What has led you to where you are now in your understanding of disability, in either yourself or in others?

Has internalized ableism been a part of your life? If so, what does it look like for you? How do you move past ableism and learn to walk with joy in the fullness of who you are as a disabled person, beautifully and wonderfully made by a good and loving God?

family life, information

flamingo chicks!

Posted on 2019-07-152019-07-15 by kristinabean

With both boys in Zoo Camp for the week, Aubade and I spent the morning visiting the zoo at her pace. Despite the heat, we had a really nice time together – and ran into an unexpected adventure along the way!

Apparently, at the beginning of the summer, the Phoenix Zoo received 11 greater flamingo eggs from the San Diego Zoo to supplement their flock – and decided to try to train them to go on walks and mingle with people, since they were going to have to hand rear them anyway. So, as we snacked by the Children’s Trail, a zookeeper came up to us and told us that flamingo chicks would be coming out for a walk in just a few minutes up by the vulture exhibit. Needless to say, we cut our snack short and made our way over.

The chicks are about 7 weeks old and just starting to grow their contoured wing feathers; everywhere else they are still fuzzy with down, and they haven’t begun eating the diet that will provide them with their characteristic pigmentation. They are also still a bit wobbly when they walk, and it was so adorable when they would have to hop on two feet and flap their wings to keep their balance. Having been raised as a group instead of as single chicks (greater flamingos only lay one egg at a time, and the chicks do not socialize with the rest of the flock until closer to maturity), they have become inseparable. They also still retain some of the snuggliness of babyhood, and a few climbed up into the zookeepers’ laps to cuddle after their walk.

While they asked us to stay about 6 feet behind the flamingos during the walk itself (or stay motionless off to the side), as the flamingos can be distracted easily, we got to be very close to them during the huddle at the end. Aubade even got to spray some water on their feet to help them cool down!

If you’re local and want to see the flamingos yourself, they are currently walking around the Children’s Trail every day at 7:30, and most days at 9:30 (depending on how hot it is). Their walk starts near the vulture and owl exhibits, although I’m sure the exact tour varies from day to day. It’s definitely not something that happens all the time, and worth braving the heat for in my opinion. Just walk out for the poop while you’re following them around!

autism acceptance month, information, quotes

the autistic operating system

Posted on 2019-04-03 by kristinabean

This post is part of my april autism series for autism acceptance month. Visit the first post here for links to the rest of the series!

I still remember the first time I heard of autism, although I don’t remember exactly how old I was (I think I was younger than 10). My dad was talking about one of his coworkers who had twins, telling my mom that while one of the children was developing normally, the other didn’t speak and liked to watch objects spin instead of playing with them in a typical way. My major impression was that autism was a sad and life-ruining thing (probably because my dad said it was sad), but I didn’t really understand what was so wrong about this little boy’s way of being and developing. In hindsight, I think this was the first time I realized that there was a “normal” way to be and that there could be something wrong about being different.

In the years since then, I’ve learned a lot more about what autism actually is: not a spectre of damaged children unable to connect and interact as humans, but a different neurological operating system that manifests in a fairly consistent range of behavioral patterns. Interestingly, these behaviors do not include either intellectual or language impairments, although both of these can present along with autism in an individual. Instead, autistic differences center around areas of social communication, sensory processing, and cognitive focus (including executive functioning). Autistic development is not necessarily disordered – it just proceeds on a different timeline than normal. Autistic ways of thinking, of processing sensory information, of handling emotions in the self and others, are not broken – just different.

The medical definition of autism can of course be found in the DSM-V, and I believe it is good to read and understand that definition even if it does portray autism in a pathologized way, but my personal favorite description comes from Nick Walker at Neurocosmopolitanism (go read the full article!):

The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable. (emphasis added)

Walker puts so much useful information into this paragraph. While lists of common autistic behaviors can be helpful, especially when deciding whether an ASD diagnosis might describe yourself or someone you know, they can often seem disjointed and random without an understanding of their underlying cause (and, I think, can contribute to the common uninformed statement that “everyone is a little bit autistic).

But knowing this central difference between the neurotypical and autistic brain can provide a clearer delineation between the two, regardless of potentially overlapping behaviors, and can also explain many of the strengths and challenges associated with autism. For example, autistic individuals can often have excellent long-term memory and fact recall, as well as higher innate abilities to analyze data and detect patterns – all of which makes sense if the autistic brain is picking up on more information (with more internal emphasis), on a cognitive level, than the neurotypical brain. On the other hand, picking up more information with a stronger impact on the sensory level can make coping with everyday life extremely difficult, when “normal” touch and sound and smell can be acutely uncomfortable or overwhelming.

I’ll be going through more of those differences, both positive and negative, later this week, but for now the important point is that all autistic traits and behaviors stem from a fundamental neurological difference, and that autism, this difference in a person’s innate operating system – in the way they perceive, process, and respond to the world around them – does not make an autistic individual any less in terms of personhood, human dignity, ethical consideration, or worth.

autism acceptance month, information, links

autism acceptance month

Posted on 2019-04-022019-04-25 by kristinabean

Each April is Autism Acceptance Month.

Not, as some groups would put it, Autism Awareness Month. It’s a different perspective, because it’s coming from a different place. The autism awareness campaigns – like the Light It Up Blue campaign from the notorious organization Autism Speaks – tend to originate from medical professionals and non-autistic parents, people who see autism primarily as a disorder that merits pity and needs to be cured. The autism acceptance campaign, on the other hand, originates with autistic self-advocates (specifically the Autistic Self-Advocacy Network): people who understand autism to be a difference rather than a disorder – a difference that gives to us even as it makes certain things more challenging, and a difference that shapes our identities. To those who advocate for acceptance, considering autism to be a disorder and trying to eliminate it feels like a personal offense.

We are here, say the autistic self-advocates, we are autistic, and we have the same rights and humanity as everyone else. Stop trying to make the way we think and feel and act mirror yours; our autistic personhood is just as valid as your neurotypical personhood.

AAMwordcloud3 — autism acceptance word cloud from the autism acceptance month website

This year, for the month of April, I have two major goals. First, I am going to spend the month writing about autism from the perspective of neurodiversity and acceptance, both as a (probable/self-diagnosed) autistic adult and as the parent of an autistic child. Second, I am going to pursue an official medical diagnosis for myself (although all the evaluations are in April, I won’t have the final word until May, unfortunately). I hope that you will join me on this journey – that together we can learn more about neurodivergence and how it affects individuals and society, and find ways to accept and love the differences in ourselves and those around us.

I highly, highly recommend that anyone wanting to learn more about autism focus on information from autistic people. Otherwise, it’s as if you’re trying to learn about the African-American cultural experience from a bunch of white authors, or trying to figure out what it feels like to be queer from the observations of the straight/cis community. Non-autistic professionals can give you an understanding of the history of the diagnosis, or the medical definition of the diagnosis, but they cannot tell you what it is like to live as an autistic person. They simply don’t have that inside understanding.

To get you started, here are some of my favorite #actuallyautistic internet presences (some of them are more than just blogs!), in no particular order:

Autistic Not Weird, by Chris Bonnello
- I’ve been following ANW for a long time now, since back when it was simply a blog. Chris Bonnello has a great sense of humor, a lot of stories to share, and an accessible way of explaining technical information. This was one of the first blogs I read that was written by an autistic adult, and finding that I could identify with almost everything he wrote pushed me forward in my own path of self-discovery. The ANW community on Facebook is one of the most inclusive I’ve run across, with autistic individuals and their families asking and answering practical questions honestly and kindly.
Suburban Autistics, by Ally Grace
- I found this blog by searching for gentle parenting tips, actually! Ally Grace and several of her children are autistic, and she writes about parenting in a gentle, accepting, positive way. I am always both inspired and challenged to be a kinder, more compassionate person and parent when I read her work – and to give myself a touch more grace in my own struggles as well. If you are on Facebook, I believe she is a bit more active there than on the blog.
Neurocosmopolitanism, by Nick Walker
- I don’t think this blog is active anymore, but it is foundational in my understanding of neurodivergence. I would quote liberally from his articles except that once I start, it’s hard to stop! So just go and read them in full. Start with Throw Away the Master’s Tools if you really want to understand the mindset behind acceptance as opposed to awareness.
The Girl with the Curly Hair, by Alis Rowe
- This is significantly more than a blog; it is a compendium of resources, especially for autistic women. Honestly, my main interaction with this site has been mediated through Pinterest, where I’ve found so many quotes – accompanied by the curly-haired girl illustration herself that – resonate with me on a deep level. (In the following quote, keep in mind that in the US the diagnosis of Asperger’s Syndrome has been deprecated and replaced by an autism diagnosis.)

alisrowequote — Quote: ‘Women with Asperger’s Syndrome may be both brilliantly strange and strangely brilliant! We are genuine, truthful, thoughtful and interesting… with unusual problem-solving skills and out of the box thinking styles. We tend to have volatile emotions, quirks, interesting mannerisms and we tend to feel most comfortable and relaxed when we are on our own.’

So for World Autism Awareness Day today, let’s start looking at autism from the perspective of difference rather than disorder, and seek to understand it from the inside out! My challenge for you is to pick one of the websites I shared above and read at least one article from it 🙂 I’d love to hear what you read and anything from it that stood out to you!

all posts in the april autism series will link here after they’re published!

information, musings

quack quack: my autistic duck analogy

Posted on 2019-01-272019-01-27 by kristinabean

Whenever my husband and I talk with people about autism, or describe some of the behaviors and traits that are related to it, someone will inevitably identify with one or more of those behaviors and joke about how they must be on the spectrum too. As another logical conclusion would be that autism is an exaggerated or imagined condition, I am glad that no one I know has used their identification with an autistic trait as an opportunity to disbelieve the existence of autism! However, the situation is common enough that I’ve been searching for a good way to illustrate the difference between having one or more common autistic behaviors and actually being autistic.

An infographic from Little Black Duck (an Australian company specializing in autism communication services) uses the analogy of pregnancy: someone might have some of the symptoms that are commonly associated with pregnancy, like sore feet or nausea or weight gain, without actually being pregnant – there is a different underlying cause behind the similar or even identical presentations.

everyonesautistic-500x708

I think this is a helpful analogy for the most part, except for the fact that autism as a condition is defined by the presence and degree of certain types of behaviors. Pregnancy is very clearly distinguished from non-pregnancy by the presence of a fetus; there is no such clear-cut biological test to distinguish the autistic mind from the allistic mind. Those very human behaviors that present in both autistic and allistic individuals are the only metric used in making the diagnosis, and the line is drawn at a somewhat subjective conjunction of multiple co-occuring traits and the severity thereof.

To me, the clinical struggle of defining the autism spectrum seems similar to the zoological struggle of defining a taxonomical species. Perhaps a duck could be defined as a warm-blooded, egg-laying animal with wings, feathers, webbed feet, and a broad bill. A seagull could relate to many of these duck traits, but not having all of them would fall short of the official criteria. A bat or a snake or a duck-billed platypus could relate on a more distant level, while a moose or bear would struggle to understand the duck at all save from an external perspective.

Likewise, some people will relate to the social anxiety many autistic people struggle with; some people will identify with sensory sensitivities; others will connect with the difficulties of small talk and nonverbal communication. People with other neurodifferences, like ADHD or FAS, will probably have more behaviors in common with autistic people than the general allistic population will, but like the seagull will fall short of the official criteria for the diagnosis. On the flip side, some people will lack almost all of the autistic traits and behaviors, and struggle more to bridge the differences between them and their autistic family and colleagues. But just like ducks are still animals, and all of their characteristic traits are shared (individually or in sets) by some species or another in the animal kingdom, so too autistic people are still human, and all of their characteristic traits can be found scattered throughout the general human population. It is only when all those traits converge that a duck is defined, or autism is diagnosed.

Now I just have to wait for a conversational opportunity to use my new analogy 🙂 What do you all think? Does it make sense? How do you try to explain the difference between autism as a neurotype and commonly seen autistic behaviors?

book lists, family life, information, wwlw

what we’re learning wednesday: episode 6

Posted on 2018-08-292018-08-28 by kristinabean

Due to his love of rain and his constant desire to know exactly when things are going to happen, Rondel has begun to ask me questions about the weather constantly. And because I never properly learned about the weather to begin with, there wasn’t much I could tell him.

So we did what we always do when faced with a topic of ignorance and armed with a thirst for knowledge: we went to the library and came home with books!

There are surprisingly few books about clouds, and no books that I could find at our library specifically about Arizona or desert weather, at least not at my kids’ comprehension level. But these three are not bad, and we’ve learned a lot from them.

Look at the Weather, by Britta Teckentrup, is a beautiful, artistic book, filled with gorgeous atmospheric drawings, leading questions and statements about the personal impact of weather, and interesting scientific facts about weather. Each page tends to have only a few sentences, so although the book is very thick it doesn’t take nearly as long to read as one might expect. It will walk you through the build-up to a storm, for instance, painting the gradual accumulation of clouds slowly, until you almost feel the tension of it around it. But it will also give you tidbits of very fascinating information – I never knew how hail was formed until Teckentrup explained it here, for example!

The Man Who Named The Clouds, by Julie Hannah and Joan Holub, is really more of a biography of Luke Howard, the man who invented the precursor to our current scientific classification system for clouds, than a book actually about clouds – but there is a serious amount of scientific information included. I particularly appreciated the diagram towards the end of the book illustrating the current cloud classification system, and we’ve been attempting to classify the clouds we see when we are out and about each day (we saw mostly cirrus clouds today; Rondel is holding out hope for some cumulonimbus clouds since they are the type of rain clouds we typically get with the monsoons!). Overall this book was a bit above the boys’ heads, and not completely aligned with their area of interest, but by skimming and omitting while I was reading it aloud we managed to get a lot out of it anyways. On a second read through I will probably include more, depending on how it seems to be holding their attention.

Clouds, by Anne Rockwell, is probably the book best-suited for answering Rondel’s questions about clouds at his level. But I haven’t read it with him yet! We’ve been distracted with the other books, and he’s caught the virus the rest of us have been passing around so we’ve been a bit preoccupied with that. This book also has instructions at the end for creating a small cloud in a jar, and I’m looking forward to doing that with the boys. From reading the book on my own, this should reinforce the information we gleaned from The Man Who Named The Clouds, and be a short, easy way to soak up more weather-related knowledge. The Let’s-Read-And-Find-Out series, of which this is a part, has been in my experience a good source of basic knowledge on any science topic we happen to have questions about.

While we continue enjoy these books, I’m going to continue searching for books about our local weather; we live in a fairly unique ecosystem, and I’d love to learn more about the weather patterns and seasonal changes specific to the Sonoran Desert. Please let me know if you have a good resource on this!

(And if you were curious about how hail is formed, here is what Britta Teckentrup has to say:

“Hail is caused when the wind sweeps raindrops up into higher, cooler parts of a cloud before they get a chance to fall. They freeze in the cold air. When the ice droplets begin to fall, sometimes the wind catches them and sweeps them to the top of the cloud again. They can cycle up and down inside the cloud several times, adding layers of water and ice as they go.

“Eventually, the ice balls become too heavy for the wind to carry upward, and they fall as hail.”

So the stronger the wind, the bigger the hail can get! Now I understand why we typically only see hail in our craziest, most intense storms – only they have strong enough winds to lead to the formation of hail.)

family life, hikes, information

hiking with littles: ellison creek

Posted on 2018-08-202018-08-15 by kristinabean

Before my husband and I were married, we hiked a lot, for most of our dates actually. It was one of our favorite ways to spend time together – we both love the outdoors, I liked having a way to be with someone I loved without the stress of normal small talk (since the activity determined the body language and visual focus), and it’s really just a lot nicer to do anything when you’re using your body and surrounded by beauty. (We even rented a remote cabin and just hiked around for a week for our honeymoon).

So, ever since we started having babies I’ve been waiting for them to be old enough to hike with us! And honestly, I’ve been waiting even more for them to be old enough to hike with just me – for them all to be able to hike well enough that I only have to carry one of them at any given time, and can even have some time without carrying any of them.

Now, at last, we’re finally there.

After giving them a taste of wildlife and the natural environment at Saguaro Lake, and realizing that they loved it, I began searching for easy or short hikes up in Payson that we could explore together while the weather is still too hot in the valley. Payson is less than two hours from our house, but the environment is very different: mountains, pine forests, narrow creek beds and rocky waterfalls, berry brambles and grapevines, etc. When it’s over 100F here, it’s in the 80s up there, with the shade from the trees, the breeze down the canyons, and the cool water to make it even nicer.

The first real hike I attempted was at Ellison Creek, at the Water Wheel crossing just north of Payson. The day use area is easy to find, with a fee of $9 (check the National Forest Service for up-to-date information, especially with regards to closures during fire season before the monsoons) and a vault toilet that it ridiculously clean.

When we arrived, I had trouble locating the trailhead, so we played in the creek for a while first, swimming in a little pool and climbing the rocks in the area (all three kids love climbing).

When we came up from the creek to have a snack, I found the trailhead. It is actually well-marked, with flash-flood warning signs and a memorial to people who have died in this creek from flash floods. This is not the most comforting way to begin a hike in monsoon season with a forecast of rain in the early afternoon, and because of the history of the location I would recommend hiking this creek at a different time of year or on a day without expected rain; if that isn’t possible, just be very aware of the weather at the moment and turn around to leave the creek area if you feel a cold breeze and see the thick clouds of a storm head rising over the mountains.

The trail begins relatively flat and smooth, and even Aubade was able to walk along here for a long time. We took some time to “stop and smell the roses” – Rondel was especially fascinated by the small insects living inside the huge white flowers of the sacred datura, and examined every blossom carefully. Just so you know, these plants are toxic and hallucinogenic, so make sure no one ingests them if you are hiking with small children. They are certainly stunning, however!

After a short while, the trail became harder to follow as it went through more rocky areas – over boulders and up ledges. I mostly decided upon our direction by guessing which path over the rocks would be easiest for small legs, and was rewarded whenever we happened upon a sandy area with footprints letting us know we were still on the trail.

We eventually stopped at a high point of the creek, where a rippling waterfall cascaded over the stones across from us and a little pool collected in a cup of the rock where we could play. The trail continues from here up to a larger waterfall that I believe has a staircase and a large swimming hole underneath, but at this point I saw rain clouds coming in and needed to turn around and get out of the ravine quickly.

Up there on the high rocks, surrounded by pine forest, with only the sound of wind, water, and birds, is fairly close to perfection in my opinion, and the kids thought so too: only showing them the rain clouds and explaining the potential risk to them convinced them to leave.

Obviously we made it out safely; the rain hit us at the parking lot while we were eating lunch, and we got to enjoy it for a few minutes before heading out for naps. All in all? A perfect introductory hike for my three adventurers, and an incredibly refreshing day for me out of the city and away from the noise and people and pressure of everyday life.

To reach the Water Wheel day area from the East Valley: Take the 87 through Payson; turn right on Houston Mesa road and continue for 7.5 miles. Water Wheel Crossing parking area will be on your right.

family life, information, sqt

{sqt} – here comes the monsoon!

Posted on 2018-07-132018-07-12 by kristinabean

People who don’t know Arizona well speak of our weather dismissively (particularly the summer weather). It’s hot enough that significant numbers of people head north for the summer, while compensating for their insecurities by arguing that their northern humid summers are actually worse. Even people who live here but have never had a chance to really get to know the seasons tend to treat the summer as a penance to be endured, a payment for the gorgeous winters, spent holed up inside thankful for air conditioning and swimming pools.

I will not debate the wonders of air conditioning and swimming pools 🙂

But I do think that Arizona summers are inherently beautiful and wonderful – they are just a lot more difficult to understand and fall in love with than most seasons in most other places. Maybe I identify with them a bit…

And now, we are fully entered into the most glorious part of summer: the monsoon season, the summer rains, the desert’s wet season. So to celebrate, here are seven quick takes about this season that I feel is so sadly neglected, forgotten, and dismissed.

April, May, and June are without a doubt the official “dry season” here. The average monthly rainfall drops to 0.25 inches for April and plummets to 0.04 inches for June (which is another way of saying that every few years there will be rain in June, but don’t count on it). While daytime temperatures steadily climb throughout these three months, reaching 110 easily by mid-June, the lows stay in the 60s and 70s so mornings and evenings are still cool and comfortable. And as long as you stay hydrated, the highs are tolerable also. I have commuted by bike through the summer (coming home around 3-4 in the afternoon) and never felt more alive.
Right when you start to feel that the heat has been going for too long – when the ground is cracking and the plants look thirsty even with irrigation – clouds start to blow in over the horizon. The dates are variable, but it is typically in early July. You step outside one morning and your glasses fog up like you’ve somehow teleported to Miami in your sleep. That afternoon you get an emergency alert on your phone for dust and poor visibility, and 30 minutes later when you look out the window all the trees are bowing low, the sky is slate gray, and the air is slanted lines of water. There may even be hail. This is when every child who isn’t chained down dashes outside to run and dance until they are soaked to the skin and shivering with the unexpected cold.
This was Monday, at the library. I glanced up and saw the rain and threw all the books in a bag and told the kids to run outside because IT’S RAINING GUYS IT’S RAINING! Don’t judge – we hadn’t seen rain since February!
Remember the dust alert I mentioned above? They are triggered by impending dust storms (also called haboobs), and here’s what they look like from an aerial perspective:
This was the storm that hit us Monday. Photo credit Mike Olbinski, from this article.

When I was a kid I used to go out in every dust storm I could just to feel the thrill of the wind and dust flying into me. Granted, it’s not the best if you’re asthmatic, and it spreads Valley Fever, but it can make you feel the power of wild nature even in a suburban backyard so it’s pretty awesome. There are also some funny side effects of having so much dust in the air – this week my coworkers all had to leave the lab in the middle of the storm because a fire alarm thought the dust from the haboob was smoke from a fire and went off!
The ground, not having been rained on for five months, is understandably unprepared for such a torrential downpour. Roads flood (although they drain quickly once the rain stops), and any narrow places in the desert will also flood. Canyons or washes (essentially the drainage channels of the desert) are the worst places to be when it rains, and people have been killed in the sudden flooding. So if it starts to get cloudy and a cool wind blows, climb to high ground as fast as possible. In more developed places, you end up with lakes instead of yards 🙂
Monsoons come in systems, so you’ll be hit with a huge storm like the one above from Monday and then have smaller rainstorms for the next few afternoons. It’s sort of like earthquakes and aftershocks. This week, we had the major storm on Monday and we’ve had at least a small shower every day since. Four consecutive rainy days after five months of nothing! It’s a change in pace, to say the least. It’s also necessitated a lot more cleaning up as mud gets everywhere. If I lived somewhere with wetter weather, I think I would need a mudroom!
Considering she voluntarily became this muddy with only splash-over from the kiddie pool to help her, you can imagine what happens every time it rains…
The wet monsoon season typically lasts through early September, although the actual storms only come every couple weeks. In between, it is just hot and humid. The humidity right now is 44% and even though it is 9:30pm and the sun has been down for over an hour it is still 91 degrees. So while June fits the Arizona stereotype of “dry heat”, we definitely see more of a humid heat in July – slightly lower highs because of the clouds, but significantly higher humidity.
I have discovered that while there are many, many good picture books about the changing seasons in other parts of the world – books about leaves changing and falling off, books about animals preparing for hibernation, books about the first snowfall of winter, books about flowers blooming in the spring, etc. – there are very few picture books of any sort about the desert seasons or even the desert animals inhabiting those seasons. It is to the point that I am seriously contemplating writing my own to try to fill the gap! It’s like me as a woman reading a book with a strong female lead, or an African American child reading a book where the people in the pictures look like her. This is the place, the environment, the habitat that my children know, where their roots run deep, and while all the other places are fascinating and the books about them are wonderful, a book that resonates with their lived experience – with their home – would be special in a different and treasured way.

I’m joining the SQT link-up at This Ain’t The Lyceum today so head over and read the other blogs! Also, if you live in a place with under-appreciated or non-standard seasons, please share! I’d love to hear other people’s experiences 🙂

family life, information, musings

responding to an autism diagnosis

Posted on 2018-06-062018-06-06 by kristinabean

We received Rondel’s clinical report today, with his official diagnosis of autism spectrum disorder. It was definitely not unexpected, and in many ways it is a huge relief to finally have it on paper with a physician’s signature and notes.

But it is also very hard to read through the report and take in the medical assessment of my child, who I see in all his brilliance and originality and intelligence, and who is being evaluated in light of his struggles and deficits. It is the very embodiment of the pathology paradigm, particularly given the list of recommendations at the end of the report that includes ABA, a therapy that is consistently attacked by autistic adults who experienced it as children. It reminded me of why we used the NODA app for diagnosis in the first place: so that Rondel wouldn’t need to be exposed to the pathology mindset, but would still be able to obtain a diagnosis for support, self-advocacy, and understanding. I just forgot that I as the parent would still have to deal with all of that negativity on his behalf, and buffer him against it.

In an ideal world, doctors could still assign the autism label without calling it a disorder. There are definite differences between the way the autistic mind functions – in the way it perceives the world, in the way it processes information, and in the way it prefers to interact with other people and objects – and the way the majority of minds (neurotypical minds) function. What people often miss, including doctors and therapists, is that the autistic wiring comes with its own unique strengths as well as its own unique weaknesses. A diagnostic process that sought to exist within the neurodiversity paradigm rather than the pathology paradigm could look for examples of both these strengths and these weaknesses, to generate a complete picture of the individual, and to help develop specific plans of support for the individual. In other words, for example: you have autism, and so you struggle with sarcasm and implied humor, you have difficulty reading facial expressions, social interactions and small talk take a lot of energy because of how hard you have to work to keep up and fit in, and certain noises and smells make you want to curl up into a ball or run away – but you also have a mind like a steel trap, the ability to make connections between information and ideas, unique ways of solving problems, and intense loyalty towards the people you are attached to. How can we craft your daily routine to take advantage of your strengths without putting too much pressure on you in your areas of weakness? That would be useful and practical support, without pathologizing the condition.

The pathology paradigm shows up in other places than the medical profession, though. Even a shift in the diagnostic process would take a while to seep through the culture – and until the culture changes, a diagnosis of autism is still going to be met by attempts to sympathize over the tragedy of it, doubt (because your child doesn’t look like he has autism), pseudoscientific “cures”, and even blatant disbelief.

What I wish I could tell everyone I know is that I am not sad or upset at all by Rondel’s diagnosis. His mind is different, and it is different in a beautiful and wonderful way. Will he struggle in a neurotypical society because of those differences? Probably so. But with love and practical support, he can also flourish and give to the world using his unique gifts and talents. He has the focus and the interest to immerse himself deeply in a topic and absorb everything there is to know about it. He has the imagination to see past the status quo and envision new ways of being and doing. And he has support around him to help develop his emotional awareness and executive functioning (two things that were a struggle for me well into adulthood).

What I wish everyone knew is that autism doesn’t just look like one thing. It might look like a mostly non-verbal ten year old communicating in one or two word phrases, dumping out every toy box and taking apart every Duplo tower, standing with the outdoor curtains blowing against his cheek to calm his body down, dancing to his favorite music videos, wanting to be part of the social action around him even as it overwhelms him. It might look like a very verbal twelve year old swinging endlessly because the sensation is so enjoyable, singing the same made-up song over and over again because the repetitive loop is comfortable and fun and transitioning to something else is hard, identifying what day of the week any date falls on, and communicating the love of God in profound and beautiful words. It might look like a four year old melting down because the color he used on his picture doesn’t look the way he expected, talking nonstop to manage auditory input, mimicking the meter and pattern of books and songs in his own games with new characters and situations, wanting a parent to snuggle with him every night at bedtime, or demanding animal documentaries at every possible moment. It might look like an adult struggling to focus on assigned tasks at work because their mind is stuck on other less-prioritized projects, getting into arguments with their spouse because of missed non-verbal cues, falling apart at movies because the emotions and sensations are just too strong and overwhelming, crying because they are running fifteen minutes later than they wanted, or developing a new system of project tracking for their lab from scratch and becoming a source of expertise without formal training because of their analytical skills and desire to learn.

Labeling all of those individuals as autistic helps them to obtain the support they need for the shared weaknesses that accompany the condition (weaknesses partially but not entirely due to living in a neurotypical society), but it doesn’t predict what they will do with their strengths and how their lives will play out. We are just as unique as neurotypical individuals in that regard! I believe – and this is why I think the neurodiversity paradigm is so critical – that if we can stop thinking of neurodivergence as disordered we can create better conditions for autistic and other neurodivergent individuals, a culture where all people can receive support in their areas of weakness and be given the opportunity to explore, develop, and contribute in their areas of strength.

What I wish everyone could see is that the autistic way of seeing and perceiving the world is also beautiful. That a person’s thoughts and feelings are equally valid whether they prefer to speak them, write them down, sign them, or use an assisted communication device. That the same processing circuits that cause us to flap our hands or scratch our arms or chew on our clothes to stay regulated are the same ones that allow us to retain incredibly detailed information and connect seemingly unrelated data in relevant and insightful ways. That the honesty and authenticity that keeps us from betraying or lying to the people we love makes up for our tendency to laugh at the wrong moments in a conversation or our inability to pick up on all your sarcasm or implied humor. That while we may experience and exist in a different way than you do, our differences do not make us less than you.

As an autistic adult (without an official diagnosis yet) raising an autistic child (now with an official diagnosis, hooray!), my plan for “treatment” consists mostly of helping Rondel to understand himself and to understand the world around him, cope with the things that are difficult and embrace the things that give him passion and fulfillment; and of prizing the wonderful individual that he is, and giving him the support he needs (right now, practically, speech therapy and mindfulness practice) to keep his areas of weakness from overshadowing and hindering his talents and strengths. It does not and will never include considering him to be disordered because his mind doesn’t function within that narrow range deemed “normal” or “typical” by the DSM.