Posted in book lists, family life, information, wwlw

what we’re learning wednesday: episode 6

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 Rockwellis 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.)

Posted in family life, hikes, information

hiking with littles: ellison creek

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.

 

Posted in family life, information, sqt

{sqt} – here comes the monsoon!

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.

  1. 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.
  2. 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.

    FullSizeRender
    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!
  3. 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:
    Massive Haboob hits Arizona
    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!

  4. 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 🙂
  5. 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!

    IMG_3601
    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…
  6. 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.
  7. 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 🙂

Posted in family life, information, musings

responding to an autism diagnosis

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.

Posted in book lists, information, links

differently wired: an introduction

I don’t remember when I first discovered Debbie Reber’s podcast, TILT Parenting, but I do know that I immediately went back and binge-listened to the entire archive, and have assiduously awaited each new episode since. It is a mix of practical advice and principled encouragement, of understanding acceptance and useful support; it encourages parents through their struggles while maintaining the worth, dignity, and humanity of their neurodivergent children. Almost all of the episodes are interviews – some with experts in the field, like Steve Silberman (author of Neurotribes) and Dr. Ross Greene (author of The Explosive Child and found of the non-profit organization Lives in the Balance); others with life coaches and parents of neurodivergent children, sharing their stories and offering real-life suggestions; still others are with Reber’s son Asher, giving the perspective of a neurodivergent child a huge platform and helping parents understand where their children might be coming from.

So when she announced that she was writing a book, I was incredibly excited! When she asked listeners to consider joining her advance book team, I signed up as soon as possible – so I’ve gotten to answer polls about book publicity options, mostly, and should be helping publicize the book’s publication when it launches in mid-June. But unexpectedly, and wonderfully, Reber convinced her publisher to let all hundred-odd people on the team have access to an advance e-copy of the book. I was walking on clouds when I got that news…

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And now that I’ve read Differently Wired: Raising an Exceptional Child in a Conventional World, I want to share it with you, because it exceeded all my expectations.

Reber is a skilled author, adept at blending storytelling, science, principles, and pragmatics into a unified whole. In the first part of the book, she explains the problem: the failure of a system that is “good enough” for neurotypical individuals to accommodate the increase in neurodivergent individuals, trying to force them to change instead of offering supports that would allow them to flourish as they are. In the second part, she outlines eighteen “Tilts” – shifts in perspective that enable change – along with action items for putting each one into practice in some small way right away.

My plan is to share some of my favorite quotes and themes from the book with you over the next two months, and then, when the book launches, to give away one copy here on the blog! Maybe you are feeling frustrated and stuck, wanting to connect with your child more deeply but not sure how; maybe you are feeling hopeless about your child’s future and want to rekindle optimism and find a path forward; maybe you are worn out from fighting for your child’s needs and need encouragement on your journey. Reber’s book can help with all of that – and it is one of the only parenting resources I have come across that (as a neurodivergent individual myself) doesn’t leave me feeling “othered” and uncomfortable.

So keep checking back – I’ll be sharing content from the book, and will open the giveaway as soon as I receive the hard copy sometime in June. If you care for a child who processes, thinks and behaves outside of what people consider to be “normal,” this isn’t a book you’ll want to miss.

Posted in family life, information, musings

acceptance vs. awareness

I’ve been spending a lot of time on Pinterest lately, in an effort to avoid Facebook (and while waiting for my books on hold to become available!), and I’ve found some really encouraging, helpful, and inspiring posts! I’ve also found quite a few off-the-wall recipes that I’ve made to varying familial approval… but let’s not dwell on that.

I think the following two images which I found there are amazing examples of the difference between awareness of autism and acceptance of autism (the first was uploaded directly to Pinterest by a user, and the second is from the Thirty Days of Autism blog):

Notice how in the first poster only the negative effects of autism are mentioned: meltdowns, avoidance, tears, frustration, worry, and stress. Autism is an evil, something that one needs to fight through with hope and prayer, like a sickness that needs to be overcome and that left unchecked would destroy one’s life. (And if it were a sickness, like cancer, that would be more than fine! As it is actually a neurological and developmental difference that is always going to be part of who a person is, however, this attitude can feel like a personal attack on an autistic individual’s identity.)

In contrast, the second poster focuses on the unique behaviors caused by autism – things that are different from normal, but neutral rather than negative: parallel play, a need for space, deep focus and passion, love of technology, and stimming. Autism is portrayed as a part of who that family is – something for which they love each other, not something despite which they love each other. Acceptance gives them the freedom to be themselves, however autistic that self might be, while still receiving unconditional love and support in the midst of their individual needs and struggles.

Let’s just say I know which lens I’d rather be seen through – and therefore, which perspective I want to take when raising my differently wired child.

Posted in information, musings

Autism Acceptance Month

Did you know? April is officially Autism Acceptance Month!

(It’s ok, I didn’t know either until this year. Really the only month I ever remember is Black History Month in February.)

But this year I plan to do something about it! (Not sure exactly what yet, in the offline world, although Chris Bonello of Autistic Not Weird has some good ideas here.)

You may have heard some of the larger autism groups promoting April as Autism Awareness Month, and as a result wonder why I am using the word “Acceptance” instead.

Well…

It is because when I search for “vocal stimming” to find out what forms it takes and how it feels to those who do it (since I do not share this aspect of Rondel’s behavior), the entire first page of search results is geared towards how to make the stimming behavior stop.

It is because the majority of websites that refer to stimming, outside of autism advocacy pages, do so in an incredibly depersonalizing way, discounting the significance of the behavior to the autistic individual and seeing only the oddity of the action in a neurotypical world.

It is because most people have already heard the word autism and know that rates of diagnosis are increasing. The “Awareness” part of the job has already been done!

It is because no amount of “services”, supports, or therapies for autistic children will be sufficient in the long run if society isn’t able to reshape itself to accommodate the autistic way of being – those children all grow up to be adults, after all.

It is because the neurotypical world will lose out on all the beauty, humor, and insight that can come from a different way of looking at things if it keeps trying to fit everyone into a single narrow acceptable mold.

It is because, one day, I hope that every child and every adult will have the freedom to be different – to be openly and proudly autistic, ADD, introverted, extroverted, etc. – without inviting bias or feeling shame.

And after all, autism does not involve a breach of the moral code. There are no objections I can think of to the existence and self-expression of autistic people besides the differences that may make neurotypicals uncomfortable or inconvenienced. Maybe if the neurotypical world could meet the autistic world with genuine acceptance and unconditional love (autists already bend their whole lives around neurotypical systems, after all), the two could create a greater whole.