Posted in giveaway, sqt

{sqt} – differently wired

As we’ve navigated Rondel’s diagnostic process, one of the most helpful resources has been Deborah Reber’s podcast Tilt Parenting – and as a dedicated bibliophile, I have found her book Differently Wired to be equally if not more encouraging and challenging. It is currently the bestselling book in Amazon’s Disability Parenting category, and #18 in their overall Parenting list, and in my opinion (having read an early release copy) it deserves that top spot.

In fact, I think this book is important enough that I purchased an extra copy to giveaway, and that giveaway is live now! Head over to the official post to comment for an entry… I think my publicizing of it hasn’t been very effective so you have a good chance of winning 😛

Continue reading “{sqt} – differently wired”

Posted in giveaway

Differently Wired Giveaway!!!

The Differently Wired launch date isn’t until the 12th, but guys, I got the book in the mail yesterday so we’re opening this giveaway now!

differentlywired

I did want to remind you that if you want the pre-order bonuses, you should order a copy of the book for yourself before June 12th. Personally I am most looking forward to the resources guide, a web page containing links to all the podcasts, articles, and experts referenced in the book. It won’t be available until the launch date, so I haven’t seen it yet, but I’m anticipating it will be exceptionally helpful. To see the full list of bonuses, visit here!

For those of you who are new to the blog, you can read my thoughts on Differently Wired, as well as some significant quotes I’ve shared, here, here, here, here, and here. If you just want the short and sweet version, Differently Wired is a book for parents of neurodivergent kids (including differences such as autism, ADHD, and giftedness), and approaches the unique challenges of raising these kids in a neurotypical society from a respectful and positive perspective. It manages to encourage and challenge parents without either minimizing their potential struggles or demeaning the children (and adults) who have these differences. The book is very practical, but I think the greatest thing about it is how it walks you, the reader and parent, through a paradigm shift via a series of Tilts in perspective and attitude. And since the pressure of mainstream society tends to be counter to these Tilts, I’m expecting this book to be one I refer back to again and again to refresh the way I look at my son, myself, and the way our family navigates life.

If you’re interested, our giveaway opens today and closes at the end of the day next Sunday! Just leave a comment on the post letting me know how neurodiversity has affected your life and/or what you are hoping to learn from the book if you win. If you follow my blog as well that will give you another entry into the giveaway, but only if you also leave a comment 🙂 I’ll use random selection (maybe have the kids draw a paper out of a hat, or something higher tech) to choose the winner, and then I’ll contact the winner to get their shipping address.

Good luck! This is an exceptional book and I am so glad to have the opportunity to share it with someone else.

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 musings, quotes

letting go

My therapist used to tell me, “it isn’t your business what other people think of you.” I’m still not sure I completely agree with her, since what other people think can occasionally have fairly large consequences on a practical level (promotions at work, for example) – but in general it’s correct. I’m entitled to my beliefs and opinions, and other people are entitled to theirs. Someone else might think I’m antisocial or making poor parenting choices because I want to homeschool; I might think someone is arrogant and disconnected from local community because they are a snowbird. But if I choose to live my life based on the thoughts of others about me and my decisions, I’ll be miserable (just like all those snowbirds would be, sweltering here all summer without the communities they grew up in, or being shut in all winter there because they can’t shovel themselves out anymore).

I have to let it go. Continue reading “letting go”

Posted in musings, quotes

it seems that our school system is failing everyone these days…

As the teacher walkout continues here in Arizona I feel like I’m just beginning to process the events and come to an opinion about it all. It’s an interesting topic for me, since I’ve always been an outsider to the school system and maintain that self-directed learning is better ideologically than the authoritarian traditional educational model we have in the US – and yet, at the same time, I recognize that the majority of children are in public schools and as a Christian who desires the good of my neighbors and community I want those public schools to be the best that they can be for the sake of the children in them. In a perfect world the school system would be fundamentally different, and I believe it is important to work towards those deep system-level changes – but in the meantime, there are children in the schools now who deserve the best our society can give them instead of being neglected in the pursuit of future goals, and pragmatic changes for their short-term benefit are a good thing.

One of my friends shared the following image on Facebook: Continue reading “it seems that our school system is failing everyone these days…”

“Asking if I want to be healed is like asking if I want to like anchovies. I cannot imagine what liking anchovies would feel like, what taste they would have in my mouth. People who like anchovies tell me they taste good; people who are normal tell me being normal feels good. They cannot describe the taste or the feeling in a way that makes sense to me.”

– Elizabeth Moon, The Speed of Dark

liking anchovies

Posted in quotes

what is autism?

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 […]

The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.

(Please read the complete article here – it is the best brief introduction to autism that I have ever come across.)

I want to be careful about oversharing sensitive aspects of Rondel’s life, so I’m not going to list specific examples here, but I will say that this description makes so much sense in understanding him – his reactions to stimuli, his emotional swings, his physical being and course of development. What is more, it gives me that understanding without making him seem broken or deficient: he is simply different. His differences may mean that he requires extra support and accommodations in a world designed for people whose minds don’t work quite like his, but they don’t mean that he needs to be fixed or changed. He is who he is. He is beautiful the way he is. And I love him for who he is, without changing anything.

(In case anyone was wondering, we don’t have a diagnosis for Rondel right now, but in seeking to understand and support him we have found that a lot of resources aimed at autistic individuals are quite helpful for him, and descriptions like this one in particular lead me to believe that he could most likely qualify for an official diagnosis under the (very pathologizing and depressing) terms of the DSM. So while the very long diagnostic process is underway, we’re going with “suspected autism” over here, per his pediatrician.)