Posted in family life

little autistic moments

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

stepping outside of routine

Change is hard. Routines give life structure and reduce anxiety. This is probably especially true in a partially autistic household…

But sometimes, you have to swallow your fears and set out into the great wide somewhere, without knowing what might happen, even expecting that something may happen for which you are utterly unprepared.

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And then, sometimes – more often than your fears would lead you to believe – there is freedom, and there is joy.

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There are places and times when the beauty and the wonder overcomes the discomfort of uncertainty or freezing water, and happiness can reign uncontested.

There are moments when the lure of the next rock over proves greater than your apprehension about the deep pool that lies between you and it, and moments when crossing over through your fears ends up being one of the best parts of your day because that thing you were so worried about is actually something you love, that brings out the adventurer in your soul.

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It takes a lot of energy to step outside the normal and comfortable patterns of everyday life; I’ve discovered that I need to plan for a day of rest and recovery afterwards. But the thrill of living more fully, more expansively, less bound by our anxieties and routines, is very often worth it.

And for me, the scent of the clean air, the caress of the warm sun, the rhythm of the flowing water, the strength and grace in every line of plant and rock – those things are always worth the effort it takes to find them.

(Many thanks to the friends who made this possible by inviting us along and giving me a safety net to quiet my anxieties! I wouldn’t have gone without the assurance of helping adult hands, since my husband wasn’t able to come along, and now I know that I am capable of handling this kind of adventure on my own in the future. Your support was invaluable for the moment as well as for the moments that are still to come.)

Posted in family life

meltdowns

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.

Posted in family life

doctors and medicines (in which everyone is sick in various ways)

Well, it’s been a busy few weeks here. To be honest, it’s been harder since Aubade’s birth than I expected it would be, considering that this is our third baby (so we should have more confidence and experience by now) and that she is a significantly easier baby than the first two. It seems like life just keeps throwing curveballs at us…

To begin with, my physical and emotional recovery from the birth has been a bit more complicated this time around, what with the severe tear on the physical side and the postpartum depression and anxiety on the emotional side. Those baby blues I wrote about last month escalated into depression and anxiety so bad that they were making it hard for me to get out of bed and be present with the kids every day; I would get up and shower because I wanted to keep the tear clean, and force myself to get dressed in presentable clothes, because if I didn’t I would just curl up under the covers and feel horrible. My husband would get home from school and I would take Aubade up to bed with me and hide from the world, so overwhelmed from the few hours of parenting on my own. I wasn’t interested in anything at all, really, but I was devouring books just to keep my mind off of real life and to drown out the thoughts of fear and guilt that kept pouring in. And the anxiety – of being left alone with the kids, of driving, of leaving the house, of talking to people outside my family, of letting everyone down, of being “crazy”, and so on – was so strong (despite its obvious irrationality) that I would have waves of pain course through my chest.

My OB treated me with a series of progesterone shots, operating on the principle that the sudden decrease in progesterone at the end of pregnancy can throw the whole hormonal system out of sync and cause PPD/PPA. Fortunately my husband was able to take care of some of them at home so I didn’t have to set up an appointment every other day for the whole series! And they definitely took the edge off of the negative emotions. The first day it felt like I was on a high – much better than normal – and I thought maybe that’s how things would settle in… but no such luck. I’m still in a hole, but it’s not as deep as it was, and some days I feel like I might be climbing out of it.

In the middle of all of this, we started getting sick. Apparently it had been a mild winter here in the illness department, but February brought all the germs with it and everyone across the valley is catching and spreading disease. Naively I thought that Aubade would be safe from anything going around because her immune system would be bolstered by mine since she’s exclusively breastfeeding, but it didn’t work out that way. Last Thursday I took all three kids to their pediatrician and after prescribing albuterol, antibiotics, and steroids for the boys she told me to take Aubade straight to the ER at the children’s hospital by our house. I was in shock. The boys had never been sick as newborns, so I didn’t realize how differently a serious illness could present in a newborn as opposed to an older baby or toddler. But because they have fewer energy reserves to draw on, and because they don’t know how to breathe through their mouths, an upper respiratory infection that might just cause a cough and a runny nose in a toddler can accelerate a baby’s breathing rate to the point of exhaustion.

The ER took Aubade’s symptoms as seriously as our pediatrician had; we were in a room within 30 minutes, which is quite impressive for a busy urban emergency department, and within another 30 minutes a respiratory therapist had evaluated her and hooked her up to a high-flow oxygen machine. (The high-flow machine pushes air gently down the baby’s airways, so that they don’t have to work so hard to pull air in past all the congestion in their nose and lungs; the oxygen concentration was originally set twice as high as normal air but they told me it was really the pressure more than the oxygen that she needed.) May I note in passing how much I appreciated the ER nurses? Fast, competent, and caring without a hint of saccharine, they inspired confidence and relieved my anxieties without minimizing Aubade’s condition. Even before the respiratory therapist arrived, they had suctioned out her nose and lungs, and did so again a few hours later when her breathing began to worsen. The pediatric nurses we had after transferring out of the ER that evening were not so wonderful by comparison, though they weren’t bad by any means.

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Aubade in the ER

So… she ended up being in the hospital for the next two nights. The boys slept over at my mom’s house for one of those nights and the first night we had her back home; my husband fought off a stomach bug and tried to keep up with school and job applications and laundry; I sat in the hospital with Aubade and held her and watched movies and tried to sleep. It was rough, even though I could tell she was slowly improving the whole time we were there. RSV (respiratory syncytial virus) usually peaks around the fifth or sixth day, which is when we were in the hospital, so we were able to adequately support her breathing through the worst of it.

Rondel and Limerick caught the same virus, and both presented with coughs and ear infections, but since they are older it wasn’t as dangerous. Rondel is now on a preventative steroid inhalant, though, as every cold he gets turns into a cough – he’s been on Albuterol at least four times just this winter. I’m hoping it will help, and I’m also hoping it isn’t a sign that he’ll be officially diagnosed with asthma at some point in the future. I suppose the silver lining of all this is that my prayer life and relationship with the saints are both growing… that daily shower is a good time to maintain spiritual health as well as physical and emotional health, with a morning prayer thrown in with the shampooing and all. Better that than nothing, anyway, and I know the kids won’t distract me then.

But hopefully the rest of my maternity leave goes a bit better! We’ve still got a spring break trip up north, summer internship applications, physical therapy, and maybe a visit to a psychiatrist to fit in to these next five weeks, on top of the regular demands of school, parenting, and running a home… so if we can stay healthy (physically and mentally) it would be great 🙂

Posted in family life

Traveling with toddlers, part 2

…schedules, routines, logistics, and sanity…

If your toddlers are anything like mine, they do best with predictable routines, familiar places, and people they know. They also tend to wake up early, go to bed early, and require multiple meals, snacks, and at least one nap every day. In normal life, where the family schedule accommodates these routine toddler needs, it’s not a big problem – but when every day is spent in a new place with extended family who aren’t accustomed to operating on toddler time, it can be more of a challenge.

For instance, what do you do when your toddlers are up at 7 but a few of the adults in the group like to sleep until 10? You can try to keep your kids quiet in the house during their most energetic hours, or you can take them out on your own with the result that they are going down for naps just as the rest of the family is finally up and ready – neither of which are great options! We used both of these options at different times, depending on how the previous night went, but I think the ideal solution would be to have an outdoor play space within walking distance, so the kids can get out of the house or hotel without getting totally worn out from a big excursion. Of course, this can be difficult to plan in advance!

The other big adjustment we found helpful for the trip was counting on car time for snacks and naps. If you’re visiting a city where most activities or people to visit are a 30 minute drive away (or more), coordinating a drive with a tired hour or bringing along food lets you get in the essentials without making the whole group sit around the house for an extra hour or so. With my parents, my brother, my sister and her husband, my grandmother, and various other family members who lived in the area, the added flexibility and time saved by utilizing car time was huge.

In the end, though, you can never really predict how a toddler will respond to the more spontaneous and potentially overwhelming schedule of a vacation, and it’s important to remember that. Encourage them when they are doing well, and reassure them when they’re struggling – after all, you are their one constant through the craziness of travel, and they need to know they can count on you to understand, love, and empower them. Don’t be surprised if they are a bit more clingy and cuddly than normal, especially at bedtime! Just enjoy the extra closeness and remember that they’ll be back to normal when they’re back home in their regular routine.