Tag: sensory processing

Posted in musings

thoughts on rest while dealing with a cold

Posted on by kristinabean

I’ve been knocked out with a cold since Saturday morning but thanks to President’s Day this was my first day alone with the kids while sick. And… I spent the entire afternoon fighting off a meltdown and trying to help Rondel do the same as he’s also getting sick. Getting to go to work tonight was such a relief – a chance to escape the emotionally charged atmosphere in the house (probably only emotionally charged due to my current mood associations) as well as the constant sensory input coming from three little kids. I was alone, with tasks demanding very little from my overwhelmed socioemotional skill set and utilizing instead the more intellectual and scientific parts of my brain.

It made me realize how much I rely on that balance to give me renewed energy for the daily work of parenting, and how valuable rest – both physical and mental – is for coping with life in a turbulent world. (Work is very definitely restful for me, at least in this season of life). It also made me very thankful that I have this built-in source of margin! It helps me regulate, process, and relax – and in so doing it allows me to care for my family in a more calm and and emotionally available way. And at times like these, when my innate emotional margin is completely used up dealing with sickness, it is particularly helpful.

What are some ways that you expand your margins and give yourself rest, thinking of rest not simply as doing nothing but as creating mental balance or emotional space?

Posted in sqt

{sqt} – biking!

Posted on by kristinabean

I’m joining the SQT link-up today, hosted by Jen at Meditatio this week! She mentions in her takes that she’s been blogging for 20 years which I find completely amazing – head over to read the rest of her post as well as the other linkers 🙂

  1. I’ve worked at the same place for close to 10 years now and I’ve commuted by bike off and on throughout that time – from two different homes, on three different bikes, and across widely varying work schedules. Currently I’m riding a $5 3-speed cruiser with pedal brakes that I bought from a retiree in a trailer park in Apache Junction and biking mostly at night.
  2. Biking at night is very different than biking in the day. I actually wear a helmet now (with a headlight strapped around it and a built-in taillight), and a fluorescent pink vest with reflective stripes. I have pictures but they’re pretty awful 😛 Safety over fashion though! I’m very visible and I can tell that most drivers are giving me a wide berth, but a lot of people just aren’t expecting a biker or feel irritated by the presence of a biker and don’t drive as safely as they could.
  3. I also put cost over fashion and instead of using something like real bike panniers to carry everything I need each day at work, I just have a plastic crate zip-tied to the rear rack of the bike. (I actually Googled how to do this just to make sure it would be stable and I found the most hilarious step-by-step guide. If you need a laugh, or want to attach a crate to your own bike, check it out!)
how not to tie a crate to a bike, image courtesy of the Eugene Bicyclist blog mentioned in take 3
  1. The hardest part about biking to work is making myself do it. Every day I think, “I’m tired, I don’t want to push myself that hard”, or I put off packing a change of clothes or procrastinate checking my tire pressure and lubricating my chain ($5 bikes haven’t had a lot of TLC in their lives and they can really benefit from it. I reduced my commute time by 10 minutes just by lubricating the gear chain, after one horrendous commute home where the bike was fighting me the whole way.). It’s just easier to take the car, since most days I don’t leave until after Paul gets home and his little commuter car is available and driving it doesn’t mean stranding him with the kids.
  2. So why go to the effort? Because every time I get off my bike at the end of my commute, I feel less depressed, less anxious, and more motivated than I did when I got on it. (The therapist I saw after Aubade was born described it as mindfulness biking and it’s pretty accurate – I just sink into the present world around me, the warmth of the sun or the whir of the wheels or the light catching on the trees, and the whirl of anxiety fades.) Of course, in the long-term it’s also just a healthy practice since I don’t have another way to squeeze 25 minute intervals of hard exercise into my daily life, but those short-term benefits are what keep me getting on the bike each day.
  3. Another benefit to biking is the sensory experience of commuting in the dark. I really, really, really loathe driving at night. Between the windshield and my glasses, all the head lights and tail lights and traffic lights and building lights fracture across my vision like broken shards, stars and lines and webs and points that feel like they’re stabbing me, and I have to stay on maximum capacity and focus the entire time just to deal with the lights and be safe and aware. When I bike, head lights are sometimes too bright (and police lights are still desperately painful) but I don’t feel like my whole field of vision is splintering apart.
  4. The flip side, of course, is that a car with a loud engine and a driver who wants to rev that engine proudly is much, much louder without the walls of the car to muffle the sound; it makes me want to get off the bike and stim until I can feel calm again. I wear headphones and listen to music or podcasts when I bike during the day, but at night with the added risk of poor visibility I don’t want to dampen my other senses. So it can make things difficult – but still definitely worth it.
My eyes don’t make such geometrically perfect patterns with the light, and the dimmer lights fracture as well, but other than that this isn’t too far off from what I see. Public domain, picture credit JB Stran.

Do any of you have the option of biking to work? Have you tried it? I’d love to hear your stories and thoughts and experiences 🙂

Posted in autism acceptance month, sqt

{sqt} – seven senses: sensory processing struggles and strategies

Posted on 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!

In autism – and a myriad of other neurological conditions – the brain struggles to interpret input accurately, either over- or under-responding to it. That then naturally leads to reactive behaviors that can cause difficulties in social interaction and everyday functioning. As this is a topic that a person could spend their whole life studying, I’m going to settle here for briefly describing each sense, a few potential symptoms of dysfunction, and one or two corresponding coping tools. Where possible, I’ll share from my own experience, both personally and with family and friends. Conveniently, there are seven senses – so I’m linking up with Kelly for seven quick takes today!

  1. Auditory: The auditory system is responsible for the recognition and interpretation of sounds. Auditory processing dysfunction is distinct from hearing loss itself, and can present as a difficulty in discrimination between similar sounds, extreme sensitivity to noise, or conversely the desire for more noise in the environment. I personally am fairly sensitive to sound – loud noises (like a crowd or a concert or a loud restaurant) make me physically tense, a day with the kids will leave my ears literally throbbing, and I struggle to focus at work without some way to eliminate the irrelevant sounds around me. For a while I was jealous of Rondel’s over-ear headphones from the church special needs ministry, but a few months ago I started using Vibes ear plugs and have found it makes a significant difference. Reducing the amount of incoming sound reduces my brain’s automatic overreaction, and thus reduces my anxiety and tension from the music at church, increases my emotional margin as a parent, and helps me work with more efficiency and focus. I can’t eat with them in, but I can have conversations without significant loss of clarity, and for the help they give me it’s definitely worth it; I highly recommend them.Ear+Plug-21
  2. Visual: As with the auditory system, visual processing is different than vision itself. For example, I have always had poor eyesight, but do not struggle with visual processing at all. People who do have visual processing dysfunction may find it difficult to keep their place while reading, distinguish between similar shapes/letters/numbers (as in dyslexia), find a specific object out of a group (like searching for Legos or puzzle pieces). Rondel has some difficulties with the visual aspects of reading, writing, and math – he reads backwards, flips or inverts letters and numbers, has trouble figuring out what word or problem comes next, and quickly shows signs of fatigue (slowing down, rubbing his eyes, etc.). After his preschool evaluation raised a red flag, we went to a optometry and vision therapy office and were prescribed a pair of magnifying glasses that help him a lot, so I’d recommend going to a professional if you suspect processing difficulties here. There are exercises that can help, but they typically require more knowledgeable guidance.
  3. Touch: The body has five different types of touch receptors: light touch, deep touch/pressure, heat, cold, and pain. Someone with tactile processing dysfunction could therefore be sensitive with regards to some of these receptors and not with others – or even by over-sensitive to some and under-responsive to others! This can manifest as very particular requirements for clothing (tight, loose, cotton, no tags, certain textures, etc.); dislike of being touched by other people; desire to stroke objects that feel certain ways; avoidance of messy play as a child; dislike of hair cuts, hair washing, and tooth brushing; engaging in potentially self-injurious behavior like scratching and head-banging; and so on. Personally, I am fairly normal with regards to heat, cold, and pain, but am very over-reactive to both light and deep touch. Something trivial that rubs me the wrong way (literally!) can bother me for hours – whether it is a hand on my shoulder at church, the grate of cutting a frozen strawberry or the pilling on an old shirt. And I am always slightly uncomfortably aware of everything I’m wearing, even my favorite and most accommodating clothes. What helps here? As far as I can tell, wearing clothes I can tolerate and choosing the most comfortable outfit possible for the situation – even when that means changing multiple times a day – helps a lot to minimize the strain. Having a fidget cube, clips, sticky tape, or some other texture to occupy my hands is also helpful – it distracts from other sensations and helps my system regulate emotionally and physically.

    fidgetcube
    The smooth ball and sharp gears are my favorite!
  4. Smell: People who are over-sensitive to smell will notice and be bothered by (or enjoy, it’s not all bad) smells that most people acclimate to or don’t notice in the first place. I have to leave the room and sometimes the house because of my husband’s personal care products – and he doesn’t even use cologne so nothing is supposed to be that scented (he doesn’t even smell his deodorant, and while he can smell the chapstick he isn’t bothered by it). There are certain people and places I struggle to enjoy being near simply because of the way they smell, because my body doesn’t adjust to it. Similarly, Rondel is very bothered by the smell of certain foods, even foods he likes to eat, and we’ve found that at those times it is helpful to light a candle (unscented or with a light scent we all enjoy) at the table to neutralize the aromas of the food.
  5. Taste: The stereotype of autistic individuals being extremely picky eaters comes from the frequency of sensory processing difficulties involving both taste and touch (the texture of food can be even more problematic than its taste for many people). Rondel and I can taste the differences between brands of the same food, sometimes disliking one while loving the other, and sometimes just needing time to incorporate the new brand into our mental repertoire. Some people, whose brains over-react to taste, might prefer bland or soft food; others might crave very hot, cold, spicy, or salty foods. For people with extreme reactions, it can be very difficult to even try new foods, since the potential physical response can be so unsettling. It doesn’t mean they are being difficult or resistant to change – they just have a very good reason to expect a new food to be an unpleasant experience. I do try to have Rondel taste new foods – but only at dinner, and only if I have reasonable cause to believe his sensory system won’t overreact to it (I’m never going to try to make him eat mashed squash at Thanksgiving, for instance). I also try to keep as many healthy and sensorily-acceptable options available as possible, so he doesn’t fall back on things like chips 🙂
  6. Proprioception: This is the body’s sense of itself and where it is in space. An individual who struggles with proprioception may run into things, hold things too tightly (potentially breaking them), kick and stomp, constantly climb on or hang from things, or play too roughly. What’s helpful here is to provide the deep touch and heavy activity that helps the brain identify the body clearly: to jump on a trampoline, to wrestle, to give bear hugs, and to lift, push, or pull heavy objects. Regulating the proprioceptive system that way can help calm someone who is anxious or upset, or can help prepare the body and brain for quiet focused activities that don’t stimulate the body enough for the dysfunctional proprioception to fully engage. In a way this is a lot like what all young children need – this is a system that takes time to develop, like the visual system, and dysfunction may not be apparent until a child is older.
  7. Vestibular: This system handles the brain’s perception and understanding of the body’s movements. So an under-responsive vestibular system will lead to cravings for wild, constant movement: spinning, swinging, fast and crazy amusement park rides, flipping upside down, and generally never holding still. Conversely, an over-responsive vestibular system may present as over-caution, a fear of heights, dislike of swings or rope ladders at the park, or a preference for sedentary activities (which can then lead to social struggles, unfortunately, as children can be mean to other children they perceive as “wimpy” or scared). Letting someone hold onto you when they are anxious about an activity that taxes their vestibular system can provide both physical and emotional support and give them a chance to experience something that would be challenging or impossible without that support (I’ve gotten to be that support several times and it is definitely a privilege) – but from what I’ve read there isn’t an easy solution here. Some things will improve with age and others may benefit from occupational therapy.

Links for additional reading:

Do you struggle with any aspects of sensory processing? What tools or techniques have been most helpful for you?

Posted in autism acceptance month

seven challenges of autism

Posted on 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!

Yesterday I shared seven highlights of being autistic; today I’m sharing seven challenges. It would be dishonest to imply that autism is without struggle – that it is a purely neutral neurological difference – and it would make advocating for necessary supports far more difficult. We have to acknowledge what our problems and needs are before we can ask for help or expect others to recognize our challenges, after all.

  1. Social communication deficits
    • This is part of the diagnostic criteria for autism, actually. This is all the awkwardness and unusual behavior and missed cues – the differences in posture or gesture or volume that make a person stand out, or the more subtle tells of anxious fidgets and poorly timed laughter. This is being 13 and hurting a family member’s feelings because you didn’t appear grateful for their Christmas present, and being totally confused about it because you thought you had done everything right. This is being in high school and having a peer tell you that you really ought to look someone in the eye when having a conversation – and then learning to focus on people’s noses instead, so well that your psychologist doesn’t realize that’s what you’re doing (this may be part of why I like large and distinctive noses 😛 ). This is laughing with everyone else even though you didn’t understand the joke, or laughing at statements that no one else finds amusing. This is forgetting social scripts because you’re just so excited about something, and jumping right into the topic without the formalities of the greeting first. This is mistiming the breaks in the conversation and either cutting people off before they’ve finished or pausing too long and making them think you’re tuning out. It looks different for everyone, but it is always present and it takes a toll; even if you can play the part most of the time, it can be extremely draining, and when you can’t act that role you risk stares and stigma.
  2. Sensory sensitivities
    • This can also be a major struggle for many (most, probably) autistic people. Noises (even at normal volumes) can be physically painful or excruciatingly uncomfortable, as can certain smells. Textures – as relates to both touch and taste – can be incredibly important. Rondel cannot tolerate the texture of foods like banana, avocado, and sweet potato, for instance, and craves very cold or very dry foods instead. Touch can be very overstimulating; for example, we were releasing ladybugs and while the kids were letting them walk all over their hands, the feel of their feet on my hand made my whole body tense up and lingered for hours after the fact. While every autistic person is going to have different sensitivities, it is fair to assume that all of us will “overreact” to some sensory input in potentially unexpected ways – and it’s just the way our minds and bodies work together.
  3. Language development
    • Many autistic people struggle with some sort of language impairment; autistic speech ranges the full spectrum from non-verbal to completely fluent, but even the most verbal individuals tend to show certain idiosyncrasies. Some autistic individuals use assisted communication devices to help express their thoughts and feelings in words when they can’t do so verbally. My friend’s son can speak a limited number of words and phrases (always increasing!) that he uses to express a large range of questions and comments. Rondel began speaking rather earlier than normal, but his speech was very difficult to understand and his grasp of pronouns is still shaky (he refers to himself in second person, especially in emotionally charged environments). I used to have fairly significant echolalia, and would repeat whole sentences or the final few words of a sentence after speaking (I remember doing it quietly for a while, and then just in my head eventually. At one point my mom told me that she had considered taking me to a professional about it when I was little, but it tapered off on its own). Language abilities are not an accurate indication of an autistic individual’s intelligence or communicative desire, however. Amy Sequenzia is an excellent example of a person who, despite not being able to speak, has intelligent and powerful thoughts and ideas to share – she just uses the written word instead of the spoken word to do so.
  4. Rigidity (discomfort with uncertainty and change)
    • An autistic person doesn’t necessarily have a rigid schedule for each day which must be followed down to the time at which they use the bathroom – that’s a bit of a stereotype. But routines are most certainly a source of stability and thus of comfort, and it takes some time for the autistic mind to recalibrate when those routines are changed. Just today, for instance, I had to do bedtime with all three kids on my own, so I brought Aubade’s bed into the boys’ room and talked all afternoon about how we were going to have a sleepover and I would be snuggling with Aubade so I’d still be in the same room as the boys. When bedtime actually came, however, and the normal routine was altered by the fact that I was on Aubade’s bed rather than one of theirs, Rondel couldn’t handle it. He became angry, defiant, argumentative, and so keyed up that he couldn’t stay still or quiet, until he left the room for a bit to rage away his discomfort and adjust to the changed circumstances. I have found that for both myself and Rondel it is best to have a clear idea the night before (or at least first thing in the morning) what the general plan will be for the day, so that I’m not setting up expectations to be unmet, and to be honest and patient when plans do have to change.
  5. Anxiety
    • When I spoke with my psychologist on Thursday, she mentioned in passing that anxiety is such an assumed aspect of autism that not all clinicians even bother to mention it separately on a diagnosis. I always, always thought anxiety was normal. I didn’t realize until adulthood that most people don’t feel sharp pain in their chest after every significant social event (like an evening spent with a date), or have to do breathing exercises before making a phone call, or go through life with a generalized fear that they’re going to make a mistake and ruin everything, or scratch their skin until it bleeds to keep the nervous tension manageable. I didn’t even know that all of that was called anxiety until my youngest sister was diagnosed and I found myself trying to explain it to our middle sister… it was just how life was, for me. And apparently that’s how it is for most autistic people; according to Chris Bonnello’s 2018 autism survey (with over 11,000 responses), about 60% of autistic people struggle with anxiety disorders – it was at the top of the list of co-occuring mental health conditions.
  6. Intellectual impairment
    • This isn’t a side of autism I’ve personally experienced, except potentially secondhand though my friend’s son (although it is hard to tell because of his language delays). But according to the scientific literature at least half of all autistic individuals are also intellectually impaired, and in clinical terms this is the dividing line between “low-functioning” and “high-functioning” autism (I’m aware some people dislike these terms for their over-simplification and potentially demeaning tone, but as they’re used in the scientific literature it’s helpful to know the definition of the terms in that context). Autism advocacy that ignores this half of the autistic population is thus woefully incomplete! And this is definitely a challenge, given the unreliable quality of special education in the schools and residential support for adults. These people are at the highest risk of being abused, neglected, or taken advantage of, and it is important for society as a whole to realize that having less intelligence – just like having poorer social skills! – does not make a person less deserving of dignity and as much autonomy as is feasible.
  7. Emotional expression
    • Emotions can be terrifyingly treacherous for autistic people. They can be devilishly difficult to decipher, acutely uncomfortable to witness, and extremely explosive to experience. I find myself trying to share with Rondel the same lessons I had to learn about the anger that tries to take over, and empathizing with the overwhelming strength of those volatile emotions (I still have them after all – I’ve just learned more coping strategies by now). Some of the scenes in movies that are most moving to my husband are intensely horrible for me because of the raw and visible emotion involved; I can engage more fully with the character’s emotion if it is diluted or filtered somehow, like through the written words of a book or animation and scripting aimed at a younger audience. Otherwise it is too overwhelming. Similarly, I struggle to talk verbally about things that are important to me (or things that have a lot of anxiety wrapped around them). Both my mom and my husband have at different times in my life maintained a joint journal where I could write down things I needed to express and communicate and receive written responses without the anxiety-ridden emotional tension of a face-to-face conversation.

Every autistic individual struggles with different challenges, and these are just a few of many. I didn’t touch on the existential loneliness of feeling disconnected and different and left-out; the low employment rates of autistic adults; the common physical co-morbidities associated with autism; or the ever-present mask and concomitant imposter syndrome. But I think it is important to share another finding from Chris Bonnello’s survey: that of all his autistic respondents, less than 15% would take a cure for autism if it existed.

cureforautismsurveygraph

Challenges and all, autism is a part of our identity and to remove it would be to fundamentally change who we are. Instead of trying to do that, let’s acknowledge our differences and struggles and design (or improve, or strengthen) the societal supports that will allow autistic individuals to flourish and thrive in their own unique way.

Posted in family life

picky eating, oral stims, and anxiety

Posted on by kristinabean

Rondel is not exactly a stereotypical picky eater, but he is quite particular when it comes to food, for clear sensory-related reasons. Texture and temperature are probably the most important aspect of a food for him – his favorite foods tend to be either frozen or in the dry-to-crunchy range. So he can be quite happy eating some tortilla chips (sometimes he’ll tolerate them with melted cheese) alongside a bowl of frozen mixed veggies, he loves toast and frozen blueberries for breakfast, he prefers crackers to fig bars, he only enjoys chicken nuggets if the outer coating isn’t at all “mushy”, and he won’t eat any fresh fruit at all (except perhaps melon in the summer or pear in the fall) after having decided his primary previously acceptable fruit (apple) made his mouth feel funny. He will eat noodles and potatoes in moderation, but not consistently. Mexican refried beans and rice are acceptable, but runnier beans and rice dishes (I have a few really good ones) are not. I don’t think he has ever consented to eat soup or oatmeal, and the thought of sweet potato or avocado is enough to make him emotionally upset. Also, having a favorite food to accompany a merely tolerable one seems to help by resetting or calming the tactile receptors in his mouth.

I had never really given much thought to picky eating prior to having kids, because I tend to be a more adventurous eater, but I am realizing now that I have my own sensory quirks. I heavily prefer foods where each bite will have a variety of textures, or where the level of spiciness is enough to leave a burn, or where dedicated chewing may be required – so in a peanut butter sandwich I will use crunchy peanut butter and orange marmalade and toast the bread if at all possible; I attempt to make even normal bland foods more bold by adding extra seasonings (cayenne in the mac and cheese, double the recipe’s amount of every single spice for spice cookies); and I enjoy fairly tough meat but can only rarely handle creamy soup.

The appearance or smell of a food can also cause an overwhelming or challenging sensory reaction. Rondel reacts quite strongly to anything that looks mushy or gooey (like yogurt or banana); I recoil from unevenly bumpy foods (I avoided looking at peeled bananas for at least a year as a child). Rondel can be bothered by the smell of the food other people are eating or even by food that he enjoys eating (which I have only observed in myself during pregnancy – I notice smells quite well but am not usually bothered by them), but we’ve found that lighting a candle on the table makes things significantly better for him.

Interestingly enough, I have also recently noticed that eating painfully spicy food actually helps lower my anxiety levels, and temporarily decreases my reliance on other stims. I’m guessing it is similar for Rondel, and may be part of why he’s been a bit pickier and more wild lately as we are out of both tortilla chips and frozen blueberries. It makes me wish some of his earlier oral stims were still helpful for him – he had been able to translate overt licking of his hands and arms into chewing a wooden necklace, and it made a big difference for him in more stimulating environments especially – but he hasn’t shown much interest in them since this summer. I was beginning to think he would take after my grandmother, who still surreptitiously chews on her hands to stim! And who knows, maybe he will 🙂 in my experience, stims can ebb and flow over time, even if some are more enduring or central.

In the meantime, we’ll keep on freezing our yogurt into creamy cold dots, stocking our house with plenty of whole-grain bread for toast, lighting our candle at dinner, and continuing to try new foods in hope that some of them will cooperate with his unique blend of sensory cravings and aversions!

Posted in musings

making accommodations for myself

Posted on by kristinabean

Every fall and spring the women’s ministry at our church creates a Bible study and hosts a few events for all the women at the church (in addition to the regularly-meeting discipleship small groups). I’ve never attended any of the events before, or been part of the study groups, just because life has been busy, but I have been feeling the need for more structure in my spiritual life to give me direction and motivation, so I went to the first meeting of the year a few weeks ago (leaving Paul to do bedtime with all three kids 😉 )

Large group events like this can be challenging for me for a number of reasons. The first is simply the uncertainty: I had no way of knowing the schedule or plan for the event, nor did I know if anyone I knew well would be attending. The second is the number of people and the accompanying audio and visual (and potentially olfactory) stimulation. I often have significant anxiety or discomfort in church every Sunday because of this factor, and there was no reason to expect it to be different at this event. A third reason is my desire to appear normal and fit in; I really don’t like attention and so I somehow needed to find a way to handle any stress without looking like I was stressed (this is called masking).

Fortunately, as a 29 year-old, I’ve developed a few strategies for coping with these challenges.

To deal with my uncertainty, I thought back to other group events I’ve been to in the past and created a potential outline for the night: mingling, some talking from the front, maybe some music, probably some discussion questions. Other than knowing that mingling always comes first, I figured the schedule would be some modular arrangement of those four activity types, and I would just need to be prepared for all of them. I put my smile on, focused on looking at least near people’s faces when conversing, and thought of some basic questions to bring up that no one would be offended by (like asking about their previous experiences with the women’s ministry at our church – a particularly good icebreaker for the kickoff event for a new semester).

For coping with sensory overload (during both mingling and music) and for staying focused during the presentations from the front, I brought my fidget cube and a pen and paper. I am not really a note-taker, but writing is a fairly effective stim when listening to a speaker; the fidget cube is perfect during discussion and small talk as it is small and discreet, and can even be used during music. My goal for the night was not to pick my skin at all, and thanks to near-constant use of my alternate stims I mostly succeeded! I definitely flapped a lot in the car on my way home to shake off the tense/overloaded feeling though 🙂

[Flapping connects back to the masking issue: hand-flapping has never been a major stim for me because it is just such a big obvious motion and I feel extremely anxious and self-conscious if I do it anywhere anyone can see me. Skin-picking is more typically more subtle (unless I start bleeding…), as is rubbing my fingers together back and forth, and the fidget cube and writing are almost normal. But as I’ve been learning more about the purpose of stimming, which is to help the body cope with sensory processing difficulties, I’ve been trying to give my body opportunities to stim naturally without instantly shutting it down because of my social anxiety. Right now that looks like stepping out of an overwhelming environment and letting my body work through the overload before going back or moving on to something else, and finding a more private space where I can relax in the way that works most efficiently for me. Bluntly, I’ll leave church a few minutes early (like I always have, to pick up the kids), and instead of just walking to their classrooms I’ll let myself flap on the way; it only takes a minute or so and it decreases my inner tension so much.

Also I dislike the word “flap” but that’s what the action is usually called so it’s not really up to me to rename it…]

Anyway, the event was overall a success! Was it exhausting? Yes, of course – but it was also spiritually encouraging. I got to be with other women who love God, talking about Him, reading His word, singing songs of praise and worship to Him, and I even got to have a long-ish chat (far away from the realm of small talk) at the end of the night with an incredible woman who I deeply respect for a number of reasons, leaving me better equipped to pray for her and for family.

While my definition of a challenge may be very different than yours, I think it is true for everyone that it is sometimes very worthwhile to attempt challenging things – and that it is always worthwhile to give yourself the compassion, understanding, and acceptance needed to adequately prepare for and evaluate yourself during those challenging things. These were some of the ways I accepted and made accommodations for my own struggles (instead of telling myself I should just fight through them and be normal) – what are some of your strategies for doing so?

Posted in family life

little autistic moments

Posted on by kristinabean

Sitting together at the library, in two separate armchairs, Rondel and I examine the book in my hands. It is hardcover, with no plastic library jacket – smooth and pleasing to touch. The colors are soft and cool. It is thick; Rondel is full of anticipation and I am a bit apprehensive about how long it might be. When I open it, he looks up at me excitedly and says, “I can smell the pages!” More and more often he is noticing the smells of his environment, drawing out for himself an extra level of enjoyment (or disgust, sometimes, unfortunately) by way of his extra-sensitive senses.

Making toast for my three kids and a visiting friend, I fill up our small toaster oven with four slices. Rondel has asked for two pieces of toast at once, since he is hungry and we normally make two at once for him. I explain that the toaster is full so he will have to start with one and have a second piece later, and he seems unable to accept the change: wailing, threatening, screaming, sobbing. He even says that he wishes our friend (a toddler Aubade’s age who I occasionally babysit, and who Rondel loves) were not present if it means that he cannot have two pieces of toast at once. Limerick, 16 months younger, turns to him and says, “Dude, Rondel, the toaster is full! You can have another one later!” But it is always two pieces, and it is not alright that now this time it is only one.

After swimming at my parents’ house, I tell the kids that we will need to go home soon because Grandma isn’t feeling great and we don’t want to wear her out by staying too long. Rondel instantly begins telling me how he doesn’t want to leave, how he wants to stay at Grandma’s house forever, and so on. But when I ask him what he wants to do at Grandma’s house, he doesn’t know. He ends up suggesting, halfheartedly, that he could watch a movie, his go-to answer when faced with a transition he isn’t sure how to handle (it comes up in angry meltdown-inducing transitions as well as the more frequent “stuck” moments in between activities).

Getting up in the morning, sleepy-eyed and hungry, trying to figure out the day’s schedule, I am immediately bombarded with requests from Rondel to play board games. They continue for the whole day: after Aubade nurses, while she naps, as soon as one board game is finished, as a response when I ask if he is hungry for breakfast or lunch, and so on. If I say no, he keeps asking; he doesn’t usually get angry or demand that I play, but he tries to persuade me by making it more convenient and breaking the process down into smaller steps, persistently wearing me down. For example, he’ll bring the board into the kitchen if I’m making dinner, or he’ll offer to roll the die for me if my hands are occupied. It is his passion, his obsession right now, and he cannot let it go.

It is easy to see the ways that being autistic affects how he perceives and behaves in the world, in all these little moments. Some ways are positive; some are neutral; some are challenging for him and potentially also for the people around him. But they are undeniably there, pervasively present in his being in the world, making him distinctly different from most of his peers. And so we work together to make the world he lives in more supportive, so he can develop and mature and learn without the pressure of trying to continually mask. We establish routines and give him advance notice of upcoming changes; we give him extra space to process the unexpected; we coach him through transitions by helping him visualize what is coming next; we help him find creative ways to pursue his current passion when other people aren’t available to engage in it with him at the moment. With each day, he learns and grows and finds ways to be himself and cope with the expectations and realities of the world around him; with each day, we learn and grow and find ways to love, accept, and encourage him in his journey. The larger world adheres to a neurotypical standard, and we’re not going to be able to change that – but in our home we can give him a haven to be himself, to recharge and calm down, to be unconditionally loved.

Posted in family life, musings

getting through a bad day

Posted on by kristinabean

Sometimes motherhood is the hardest thing I’ve ever set out to do. Sometimes I wake up already tired, already touched out from a night of nursing a sick baby, already talked out from a friend’s birthday party the day before, wanting to do nothing but bury my head in a pillow (or maybe a book) and isolate myself from the world around me until my equilibrium has sufficiently recovered. As everyone knows, of course, parenting doesn’t typically allow for such unplanned luxuries.

Sometimes every interaction is a battle not to yell or speak harshly. Sometimes the worst part of me wants to scream until everyone feels as awful as I do. Sometimes I can’t even handle the baby sitting on my lap with a book because I’m so sensorily overloaded that my skin crawls at the touch. Sometimes I pray for peace and gentleness and stumble again into anger the next minute.

Sometimes I look at my child and the tears in my own eyes – at my own imperfection, at the horrible way I’m acting – are mirrored in theirs.

Somehow we make it through the day anyway, with lots of apologies along the way. We get outside, if we can, and the calming influence of the outdoors leads to laughter and connection and positive strength. We read our bedtime books and the kids still ask for their “Pookie kisses” of Sandra Boynton inspiration. I tell them what I saw in them that made me proud, and apologize again, and we snuggle to sleep. And at last, the closeness of their bodies to mine can be felt as love by even my chaotic mental processor.

And I remind myself that these bad days are few, and that tomorrow is another opportunity to be compassionate, gentle, self-controlled, loving, present, and joyful with my children – to put in again the hard work of cultivating the fruit of the Spirit, and hopefully do a better job of it. I will fail, and the kids will fail, and I pray that we will in our failures learn both to be humble and to forgive, both to self-advocate when we are overwhelmed and to serve unthanked when we see others overwhelmed, both to grow closer to God who is alone perfect and who gives unending grace and to grow closer to each other even as our sin threatens to tear us apart.

Posted in sqt

{sqt} – emotional self-regulation

Posted on by kristinabean

In our house, we have big emotions.

It’s not too surprising, all things considered. Paul likes to attribute my temper to my “Cuban spice” (which is always highly embarrassing), and I tend to believe it is related to my autism (see an amazing article here which could have been written by me if only I were that insightful and eloquent), but wherever it originates from it comes on quickly and lasts indefinitely (forever really, unless I put in a lot of mental and emotional effort). Rondel is similar – flaring up like a match at an unexpected change or a trivial argument or finding out he was wrong about something he thought was a fact – although I’m not yet sure if he will be a grudge-holder like I was as a child. Limerick is constantly pushing himself, and will break down in frustration if he can’t accomplish something he feels he should be able to do. Aubade still uses shrieks and screams to communicate most of her (very strong) opinions and feelings, since she’s only just starting to take off verbally.

So right now, while academics are important and interesting and fun, I feel that emotional intelligence and self-regulation are also a very important area of emphasis for us. It may not come naturally for most of us in this household, but as I have learned over the years it is very helpful in life overall, so it’s something we’re consciously working on together: and these are some of the ways we’re doing that.

  1. Affectionate Physical Touch (e.g., hugs, snuggles, and read-alouds): Little kids are very physical creatures, and so making sure we have lots of time snuggled up together reading books, or letting them lounge on top of me while we’re playing with toys, or making a comforting hug the priority in a meltdown situation, is helpful in a number of ways. It acts as a preventative, helping keep emotional systems running smoothly so that crises are less likely to occur; and it acts as a balm, soothing and quieting the overwhelmed nervous system so that the rational brain can regain control and come up with a solution to the triggering problem. All three kids will come to me throughout the day for a hug when they are feeling sad, overwhelmed, or disconnected.
  2. Physical Play (e.g., running, wrestling, jumping on the trampoline): Going back to the physicality of children – but also appealing to research on the value of exercise for emotional health – wild, active physical play is also very helpful for learning to handle big emotions. Especially on days when everyone is struggling with irritability, and small triggers are escalating into large events, running and wrestling together seems to help us all shake off the mood fog and reconnect with each other in a positive way. So far this has been something I’ve had to initiate, as the kids seem to forget how good it feels to be active when they are grumpy and quarrelsome, but I’m hoping that as they grow they’ll be able to choose it on their own more often, as their bodies let them know they need it.
  3. Bodily Needs (sleep, food, water, sensory peace): This is kind of a broad one, but basically it is hard for a brain, especially a young developing one, to focus on managing emotional responses when a more urgent physical need is unmet. So meltdowns tend to happen more frequently when people are tired or hungry, or in overstimulating environments (crowds, loud noises, unpredictability, flashing lights, information overload, uncomfortable clothes, etc.). There are some easy physical ways to reduce the burden on your brain in these situations, such as never leaving home without snacks and water bottles, and never forcing yourself or your children to stay in an environment that is stressful and uncomfortable. For example, I let Rondel wear T-shirts and athletic shorts to church and take off his shoes in class, and the church has noise-reducing headphones that he can wear if the noise is bothering him. These accommodations reduce the amount of negative input his brain is dealing with, which in turn enables him to use more energy on social and emotional functions.
  4. Mindfulness: Ok, but sometimes you can’t prevent the emotions or avoid the triggering situation, and you still have to learn how to control your own reaction to the event. This can be so hard when your emotional reactions tend to hit you like a punch in the stomach with no prior warning… but what I have found to be very helpful for me is simple mindfulness practice. When I am present in the current moment and aware of my body, I can begin to detect clues that my negative emotions are building up, and try to take steps to defuse them before they explode. I can choose to close my eyes, breath deeply, and focus on the breathing for a few seconds, letting my diaphragm trigger my vagus nerve to calm my body, mentally stepping away from the situation I can’t truly leave in the moment, giving myself a space to think and decide how I want to react before the words leave my mouth. I don’t think my kids have quite figured out how to take deep breaths yet, but we’ve worked on taking that space before reacting (in real time with conflict situations) and it was helpful for them as well.
  5. Mediation and Modeling: Since my kids are still so young, I find myself stepping in when arguments begin to escalate into more emotional conflicts. My goal in these moments is not to solve their conflict but to walk them through the process of resolving it themselves. I hug them, I listen to each one of them tell me what is going on from their perspective, and I attempt to rephrase the situation so that they can both agree that I understand (my initial understanding is often incomplete, and they will correct my phrasing until they are satisfied I understand). Then I will ask each of them in turn what idea they might have for moving on from the conflict, and help them come up with ideas if necessary until they can both agree on one. Sometimes they are able to go through this process independently, and I am so, so proud of them when they do!
  6. Peacemakers Cards/Time-in Toolkit from Generation Mindful: This tool for emotional development has been more than worth the cost for us. Currently, we primarily use the peacemakers cards and the accompanying poster and stickers. I will hold out the deck of cards and let the boys take turns choosing ones, and we’ll spend time talking together about what the cards say: phrases such as “I am kind,” or “I stick with things and get things done,” or “I am adaptable – let’s move and dance!”

    peacemakers_dolphin_cards_amazon_photo_2017_1024x1024
    The “Peace Dolphin” overview card, with the five individual cards from the poster. We recently did Peacemakers after a big fight and randomly pulled three dolphin cards in a row… they were extremely helpful in processing the event, handling the emotions, and planning for the future.

    We talk about ways the boys have recently lived out those phrases, or times when we saw examples of it in a book we love, or situations where it might be challenging to embody them. For card with an action, like the last one in the list above, we’ll get up and act it out (it’s always fun to start silly dancing around the bedroom, after all!). I realize this may sound dull but the boys ask me if we can do Peacemakers cards on a regular basis, and it has led to some great conversations. he other poster in the toolkit has a lot of suggested strategies for calming down in emotional crisis, as well as a few charts representing different feelings in comparison to each other, and those have been helpful as well. Sometimes it’s hard to think of a coping strategy in the moment, so having the visualization on hand can be useful.

  7. Prayer: Of course prayer. Always prayer. Prayer for the fruits of the Spirit in my life each day. Prayers for peace, almost as a mantra, over and over again in the worst times. I remember when Limerick was little and I’d be hit by a wave of anxiety or stress that I would pray “Father, give me peace. Jesus, give me peace. Holy Spirit, give me peace.” Simple enough to repeat when I had no head space for words or complex thoughts, powerful in its reminder to me of the Trinity in all His love and presence. Prayer for connection with my Father, just as important for me emotionally and spiritually as is my young children’s connection to me and Paul is for them. Prayer to the saints,to have their community and support with me when things are too overwhelming for me on my own. Prayer to Mary, the mother of the church, who loves me and my children and helps me to be a better mother to them. Scripted prayers when I’m feeling disconnected and my own words won’t flow; spontaneous prayers when my heart is crying or rejoicing. Emotional regulation is hard for me, and probably always will be – I can never seem to find the middle ground between keeping everything in and letting everything out! But as in every other area of life, God in His grace is sufficient in my weakness: loving me as I am and helping me to grow.

This doesn’t even go into things like self-care and quiet time and community, which are all so helpful for lowering one’s negative emotional baseline and raising one’s trigger threshold – there are so many ways to help develop these skills and create a protective buffer around areas of weakness to keep them from causing damage and regrets. But these seven are some that I found particularly valuable for our family in this season of life, and I hope that they are helpful for you as well!

I’m linking up with This Ain’t the Lyceum today, so head over and read some of the other Quick Takes!

What are some strategies you use for keeping your emotions from getting out of control? What helps you the most in moments of overload or anger?

Posted in family life

meltdowns

Posted on by kristinabean

People are hard for me.

Last weekend was filled with people – a water system sales guy came over right after work on Friday, we had our church small group on Saturday morning, I took the kids to a park Saturday afternoon, we went to church Sunday morning, and we visited my parents Sunday afternoon. So – a complete stranger in my house for several hours, and a crowded, noisy, open-plan park, on top of a weekend already social-heavy, with the looming threat of preparing for the babysitter to come Monday morning, was not a good situation.

Unexpected changes of routine are also hard for me.

Last weekend had a lot of those also. I had hoped to celebrate Candlemas with the boys on Friday after work by melting some beeswax and making earth candles in the planter out front (I had even managed to find my old candle-making supplies from high school!). But then my husband made the appointment with the water system guy (for the promise of a Home Depot gift card, which is always useful), which started 30 minutes earlier than I had thought and went considerably longer than I had expected. So because of a misunderstanding about the start time I didn’t get home until shortly after he arrived, meaning my normal coming-home rituals and reconnection with the kids were hampered; the length of time he stayed meant we didn’t get to make candles and didn’t even get to have time together as a family until dinner (which I had to throw together last minute as soon as the sales guy left).

In addition to that, I forgot how crowded the parks around here are on Saturdays this time of year, and this was a new park for us. That in itself was stressful, because we didn’t have a routine for where we would go first, what we would do next, etc., and what favorite corners we would end up in, and it is hard to develop those routines when there are so many other people around. But it became exponentially more stressful when Rondel didn’t stay put while I maneuvered the stroller around an awkward spot, and wandered off into the crowd. Those 5-10 minutes before I found him (ensconced in the arms of a mother with an older daughter, who had come across him panicking and offered to help him) were some of the worst I’ve ever lived through, as I’m sure any parent would agree!

Then, Limerick had a low fever and runny nose Saturday night/Sunday morning, so my husband stayed home with him while I took the other two to church by myself – which was not really that stressful, but it did change things up and force me to make a lot of logistical/efficiency decisions that I don’t normally need to. Not a big deal in itself, but not ideal after the two days prior.

So… I crashed, Sunday night. As in, I laid myself down on the bed after dinner and cried, leaving everyone else to fend for themselves. I had spent all my energy on small talk, relationships, social navigation, people in all their myriad forms, and I had none left to craft the semblance of “engaged parent” for even the remaining hour or two till bedtime.

We hear/talk a lot about children having meltdowns – how to help them, how to distinguish meltdowns from tantrums, how to prevent meltdowns from happening in the first place – but we seem to think that once someone is an adult, they’ve somehow managed to outgrow them. Well, adults can still be introverted, socially anxious, and sensitive to sensory and emotional stimuli. We can still push ourselves too far. We can still collapse, now, just like we did when we were children – and the best way to help us is with space, rest, patience, and gentleness.

(Protip: it is not helpful, in the moment where a meltdown is happening, to try to identify a specific trigger and explain all the ways that trigger is really insignificant or fixable and therefore unworthy of causing said meltdown. Did you notice how many things I mentioned in this post that contributed to my meltdown? And yet the apparent in-the-moment trigger was a whiny baby during dinner. When someone is emotionally collapsing and feeling completely overwhelmed, they aren’t going to be able to give you the blow-by-blow account of the multiple days’ events that led up to the meltdown.)

(Another protip: It is also not helpful, if you see a person supporting someone else through a meltdown, to start talking to the support person about how you don’t understand what’s going on and really don’t know what to do, with a shocked, confused, and/or repulsed look on your face. The support person is busy taking care of someone in clear emotional/sensory need; they most likely do not have the time or bandwidth to simultaneously coach you through the ins and outs of what a meltdown is, why this particular individual is experiencing one, and how he/she prefers to be assisted through it. If you want to learn, bring it up another time. But in the moment, shut up and give the individual some space and privacy unless they indicate otherwise.)

Things to remember:

  1. I (or my child) am not necessarily melting down because I dislike you, the people in my immediate vicinity. In my experience, meltdowns occur more around trusted friends and family.
  2. I (or my child) am most likely not melting down because of something you did personally, but because of some environmental factor pushing us over the edge. This could include:
    1. Physical discomfort (itchy clothes, hot/cold feelings, allergies, hunger, fatigue, etc.)
    2. Sensory overload (large groups of people, loud noises, irritating noises, bright lights, strong/unpleasant/unusual smells, etc.)
    3. Anxiety (crowds, unfamiliar locations, unexpected changes to routine, uncertainty with how to navigate the social terrain, etc.)
  3. I (or my child) would very much rather not be melting down, especially in front of you, and are trying our hardest to contain, control, and calm ourselves.
    1. For example, Rondel, today, when I asked him to try communicating without screaming, told me that screaming was the only way he could tell me how he felt. This statement is not always true of him – but in that moment, with the emotional capacity available to him in his meltdown, it was true, and I needed that reminder.
  4. I (or my child) would appreciate it if you could minimize reference to meltdowns and welcome us back with open arms when we are ready to rejoin you.
    1. If you help us avoid triggers, pace ourselves, and prevent collapse – without making us feel like incompetent and defective human beings by snide/cutting remarks or tones – that would be amazing. That would feel like full and complete acceptance and love. But I understand how hard that is in an ableist culture. It is still hard for me not to address myself with negative and shaming thoughts following a meltdown, given how much our society values self-control, self-sufficiency, and outward appearances. So I don’t expect otherwise from you – but if you can consistently provide otherwise, you will become one of the few people I implicitly trust, and around whom I can step out from behind my layers and facades.

Meltdowns happen. Rondel had one just today, victim to another over-scheduled weekend (which was partly my fault, and I feel awful about it). We can try to suppress them with feelings of shame, isolating the individual for their socially inappropriate behavior, or we can support the individual through them, and learn from them so that we can be better prepared for the future. I know which choice I’d rather make – for myself, and for my children.