Posted in musings

turning thirty

I suppose turning 30 is as good a time as any for contemplating my twenties and looking ahead to my thirties, since we use a base ten system. Ten years is such a long time, when I sit down and think about it – I mean, ten years ago I was single and in college, and ten years from now I will have two teenagers…

It is interesting how time passes, how so many things change about life and circumstances, and how yet, inside, I still feel like the same person I always have been. I suppose I have grown and matured since childhood; but I still feel like the preteen who couldn’t put feelings into spoken words even when she was bursting with them, like the teenager who was haunted by feelings of inadequacy and failure, like the college student who knew how to excel academically but could never maintain social connections, like the young adult who tried to bury her insecurities by attempting to be perfect at absolutely everything. I suppose that is part of being a complete person: carrying a self that at its core remains one thing, one entity, despite the processes of maturation and the effect of time.

And what have time and maturation done for me, these last ten years?

Superficially, I graduated college; got my first non-student job (which I’m still at 8.5 years later!); lived with roommates for a year; recovered from a break-up; lost a treasured mentor; dated and got married to my husband; bought two homes (we moved); and had three kids.

Not so superficially, I struggled a lot over the last ten years with my inner companions of depression and anxiety. The first year of our marriage was especially hard because it felt too good to be true, I suppose, but in the long run our marriage has ended up being one of the most helpful things for that struggle since I have a partner I can trust to unconditionally love and support me through hard times. Also in this decade I sought out professional help for the first time and found it incredibly helpful. I’m realizing that depression and anxiety are fairly loyal and steadfast traveling companions, so I know I’m in for a more struggles still to come, but I’m also realizing that having them around doesn’t make me any less valuable or worthwhile as a person.

Along with mental health and marriage, parenting and neurodivergence have been the two big players in my life over the last decade, particularly the last five years. I have been learning that difference is not necessarily negative, in either myself or in others, that perfection is not the goal (and is ultimately a subjective goal anyway). I have been (and probably always will be) learning to be patient 😛 I am learning how to draw boundaries for myself – even with my children – and how to teach my children to draw boundaries for themselves. I am learning that a bad day or a difficult season does not make me a failure as a parent. And I am learning not to compare myself or my family to other parents and families, because the differences of personality, neurotype, and circumstance are so vast and varied.

Most days, honestly, I feel like an imposter at this whole adult-ing thing. Inside I’m just a teenager, nervous and insecure, with the added pressure of having more years of mistakes to look back on 😛 According to my husband this is fairly common, though, which is somewhat consoling 🙂 My hope is just that, however many years are still to come, I will keep growing in wisdom and holiness, and that I can be a blessing to the people around me instead of running away from them.

Posted in family life, musings

parental ableism

It is hard to be a child. It is hard to be a parent.

It is harder still to be a child with a disability – to be noticeably different from the world while still having to find a way to live in it, to be growing and developing on a different timeline and watching younger friends and siblings attaining higher skills, to be unable to participate in “normal” activities and events. And it can be harder to be the parent of a different child as well: there is the pain of seeing your child left behind, isolated, excluded; there is the sorrow of knowing certain paths are closed for them; there is the hurt of watching them hurt, physically or mentally, because of their condition.

Anyone who denies that parenthood can be difficult is delusional, but in the autism world there is a subset of parents who twist their children’s difference into a curse, who portray themselves as martyrs and who thus by implication make themselves out to be the victims of their children’s autism (and, since autism is an integral part of a person, victims of their children). I haven’t had much contact with these parents, and I am not sure how large of a group they are though I have read about them often on neurodiversity advocacy websites, so I didn’t have the inoculation of experience to protect me when I opened up Pinterest and saw this image at the top of my home page:

badparent
White words on a gray background: “I have a child with Autism. Everybody sees his struggles, but nobody sees mine. It’s hard to be screamed, yell at, every single day. It’s exhausting listening to him cry every single day.”

This parent is clearly feeling resentful of their child. They see their son struggling, and instead of responding with compassion they just resent the burden that those struggles impose upon them as the parent. (So while they “see” their son’s struggles it doesn’t seem like they are knowing and understanding their son in his struggles.)

Well guess what?

Your son didn’t ask to have a parent who doesn’t want to hear his tears with love, or to help make his environment safer and more accepting so that he’s not continually triggered to tears and screams, or to view him with compassion and understanding.

Your son didn’t ask to be born autistic in a world that values normalcy and conformity, especially in children, who are expected to walk in obedient lockstep through the typical developmental stages and the standard grades of school.

And I can guarantee you that your son doesn’t want to scream and yell at you all day long. Every child – yes, even autistic children – want to have a relationship of peace and love with the people that they are most closely tied to. His behavior is how he is communicating to you that something in his life is horribly, terribly, wrong. He could be non-verbal and in physical pain he doesn’t know how to communicate or address (like my friend’s son often is). He could be overwhelmed by an uncomfortable sound or smell or feeling, and be unable to handle that sensory input on its own or in conjunction with some other social trigger (like my son often is). He could be in ABA training for hours each day and have no other way to tell you that it is sucking the life out of him to be forced into a neurotypical box where he knows he will always fail and always be judged.

Maybe you, as the adult in this relationship, need to address the anger issues you have with your son’s autism before blaming him for the way you are reacting to his attempts to communicate with you. I understand that things can be hard, but it is never appropriate to shame your child for his struggles on the most public forum possible (the Internet), and it is incredibly immature to add to that by insinuating that your struggles are all due to his inability to be a normal child, that you are some sort of martyr for putting up with him. Get the support you need, and check your attitude, in a private community where your child’s dignity can be protected and respected.

goodparent
White words on an orange background: “AUTISM. When I have a hard day I know he’s had it harder.”

I love this second image so much because it acknowledges that both parents and children will struggle without victimizing either of them, without an attitude of resentment towards either of them, and with respect and tenderness towards both of them. (And it puts it so gently too!)

Like I said above, the hard and difficult behavior of a child, especially a child on the spectrum, and even more especially a non-verbal child, is a method of communication. Their needs and wants and struggles will show up in the way they act, and while their behaviors may be particularly challenging for a parent to deal with, they are a symptom of something deeper that is wrong.

And if you are that parent, faced with those challenging behaviors, feeling at the end of your rope, unsupported in your own struggles, please find help, and please do not blame your child or their autism for your struggles. Honestly, blaming anything only leads to more resentment. Try to see those behaviors as a clue to finding the best way to support and help your child. Try to see your child as fully human and fully deserving of respect and dignity despite their struggles and the struggles you have as their parent. And try to remember that no matter how hard your day is – as a neurotypical adult in a world set up for the way you operate – that your child’s day – as a neurodivergent child in a world foreign and alien to the way they operate – was almost certainly harder.

Posted in sqt

{sqt} – a very random list of things

I’m linking up with Kelly again today and I have no theme at all! Proceed for seven very random facts about myself and our week, some of which (say, 1 and 3 maybe) may explain my relatively low posting volume this week.

  1. Slightly embarrassing confession: I really like reading Harry Potter fan fiction (especially about the Marauders)… some if it is quite well done, and it’s basically like reading short stories about characters I kind of know in a world I’m already familiar with and it’s so good to be back in that world exploring it more.
  2. Another confession: I love reading books that make me cry. And nothing makes me cry more than the fumbling attempts of imperfect human love and compassion to console and heal people broken by the world. Like, a story where someone is finally finding a place where they belong and are accepted after years of feeling alone and inadequate and unlovable? I’ll be sobbing all over the place and I’ll reread it at least three times.
  3. We have been doing so many fall things that we almost burned out this month – multiple hikes up north, two different local pumpkin farms, picture books, pumpkin faces, pumpkin painting, fall-themed finger-painting, fall-themed play dough… it’s getting a bit excessive. I suppose we are simultaneously relishing the colder weather that makes it feel like fall and making up for the lack of traditional autumnal colors 🙂
  4. I’ve been avoiding Facebook because it’s been making me angry, and I’ve been hanging out on Pinterest instead. But then today Pinterest made me angry too 😦 I’m going to try to write about it this week (update – here’s the link) because I think it is an important point and not an irrational emotional response. Short version? Don’t act like you are victimized by your kids. There’s a difference between having a hard time as a parent and throwing your kids to the Internet wolves like it’s their fault for existing and having struggles.
  5. Rondel found a kangaroo Halloween costume he loved back in August… and he’s already outgrown it! He requested butterfly wings instead (because he glanced at my Pinterest and saw them) and chose a species called the Royal Assyrian from our Eyewitness book on butterflies. Neither of us felt comfortable just making up a butterfly; we both felt much happier looking up a real one. It wasn’t his first choice but it was his first choice that didn’t have black on it, since I have yards of felt in about 10 different colors but for some reason have no black felt. It is brown and purple, so it isn’t especially vibrant or bold – but he does want to add purple glitter so that should brighten it up. And it just makes me really happy that he can have all the fun of bright sparkly colors without someone telling him that purple glitter is for girls.
  6. For anyone else wanting to make butterfly wings or similar crafts with felt, I strongly recommend using a glue gun and I strongly recommend not using ModgePodge. I mean, unless you want your felt to become stiff and hard and not reliably stick together…
  7. And finally: it is not safe to let me into a craft store without a defined list and a spending limit. I went to buy a glue gun and pom-poms today and came out with pipecleaners, googly eyes, and a coloring book as well. (And the 300 pack of pom-poms instead of the 6 pack which is really all I needed, because they’re just so cute and fluffy and the kids will love them and pom-poms will be everywhere!!! My husband is horrified.)

I hope you all had a great week! Are you excited for Halloween? Are your costumes ready or are you in the midst of last-minute creations like we are?

 

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

getting through a bad day

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} – reclaiming joy

I noticed this week that my children never want to go to bed, because they are just having so much fun and don’t want the day to end, and they wake up each morning full of excitement about the day ahead.

My husband and I, on the other hand, have entered that exhausted parent state where we spend all day waiting for night to come so we can have some quiet space and rest. It makes sense that we end up there, but constantly looking forward to the evening has a tendency to rob the day of its joy.

How can I reclaim some of that joy I had as a child about the new day ahead of me, full of potential for discovery and adventure, for beauty and love?

I’m not entirely sure, but today’s seven quick takes are going to be some ideas I want to implement in my own life this upcoming week. Head over to This Ain’t the Lyceum for the rest of the {sqt} link-up!

  1. Reframe the moment: when something is irritating or inconveniencing me, is there a way to look at the situation through different eyes? For example, when one of my children is whining and flopping around about something, I tend to be instantly triggered into frustration. I want to yell at them to pick themselves up and show some independence! At the very least I want to ignore them until they stop whining. But though that is my automatic response, a change in perspective can help me build a more compassionate and helpful response. If I can hear the whining and think, “here is an opportunity for me to love and serve this child like God loves and serves me,” then I can help them with their needs and wants with more gentleness and joy (although I will still ask them to try using a different tone of voice!)
  2. Pause: this goes along with the first point, since a pause can be a good time to try to reframe a situation. But it is good and useful all on its own, also. Instead of coasting through my day on autopilot, pausing for all sorts of reasons can help me see the beauty and feel the joy of everyday life. I can pause to watch with pride as my children take turns with their favorite water bottle; I can pause and count to ten when I hear angry voices coming from the play room to prepare my heart before they come running out to me; I can pause; I can pause when the baby has made yet another awful mess and make the cleanup something we can do together rather than something to make her feel ashamed about. I can pause to breathe out a prayer and breathe in grace when life is overwhelming.
  3. Put the phone away: except for when I’m reading a good book or listening to a good podcast (things I can mostly only do when I’m alone anyways), phone time tends to be an escape from reality and as such hinders any attempt to find joy in my current reality. It distracts me from the good and happy moments of the day especially, since those are the times when the kids are least demanding of my attention – and so it blinds me to the everyday beauty of their growing relationships and maturing character.
  4. Have a plan: if I know at the start of the day something fun that we’re going to do later, the anticipation and enjoyment of that event can easily spread throughout the rest of the day. And if we don’t follow through with the plan because we’re having too much fun doing other things, that is also a source of joy 🙂 It also eliminates some of the tension of looking forward through 12 empty hours not knowing what to expect and thus how to mentally prepare, and it breaks up the cabin fever the kids sometimes get when we’ve been in the house hiding from the heat all day. This could be some sort of outing (like the park or the library or even the grocery store), but it could also just be an activity or craft that we don’t do as often because it requires more set-up (like water balloons or finger-painting).
  5. Go to bed on time: because if I’m tired, it’s going to be a lot harder to feel happy. It’s going to be a lot harder to make the mental effort to reframe each moment. It’s going to be a lot harder to pause instead of reacting emotionally. And it’s going to be a lot harder to be present and engaged instead of sinking away into the virtual reality of my phone.
  6. Play with the kids: play is where they are finding their happiness, joy, and intellectual fulfillment right now, at this age. And they still want me to play with them a lot of the time! Essentially, they are inviting me into their happiness. All too often, being a boring (and tired) adult, I turn them down and find other “more important” tasks I need to do. But if I could let myself go – relax my body, forget the to-do list, ignore the “should’s”, suspend my disbelief – and play with them, even for a little while, I could in those moments have the presence and the joy that they have, and connect with them through it.
  7. Sing!: and dance! Move my body, stretch out of my comfortable shell, and make music! Music is so good for all emotional states – it expresses sorrow and anger, passion and despair, joy and silliness, peace and contentment, and in the expression elicits and draws out those same feelings in us, helping us experience them more deeply and process them more fully. So going back to point 4, I’m planning on having a dance party to silly kids’ songs at least one day this week, and I’m not going to care if my kids think I’m crazy!

What about you? How do you find joy when life is monotonous or stressful?

Posted in family life, musings

overcoming the fear of differences

Difference doesn’t need to be a reason for separation, distrust, or conflict.

This morning I watched as kids from 18 months to 10 years old played together. Everyone waited patiently without pushing or complaining when one of the toddlers wanted to climb up the ladder to the water slide, and the big girls helped her slide down when she was scared at the top. Four year olds and 8 year olds batted balloons across the house together; 3 year olds and 9 year olds danced to music videos together. The difference in their ages – a very significant difference, honestly, in both physical and mental development – was not an impediment to enjoying their time together.

This morning I watched as children with multiple developmental disorders and disabilities played together. A girl with Down syndrome held hands with two “normal” girls as they careened down the water slide together laughing. Four boys with varying levels of autism and speech and language delays and two neurotypical boys took turns on the slide, crashing into each other, trying new ways of going down, splashing themselves and each other, without any comments on the different abilities or behaviors represented. The point was to enjoy the water, and they all enjoyed it in each other’s presence without being held back by the very noticeable differences between them.

This morning I watched as people gathered together to celebrate the life of a boy who is different in multiple ways, who faces unique challenges, and who is very much loved. I am sure that it was this love, spilling over from everyone present, that smoothed out all the potential conflict that could have been caused by the myriad of differences there this morning. By learning to love at least one other person unconditionally, with complete acceptance, with eyes to see them for who they are, with ears ready to hear them however they are able to communicate, we begin to learn how to extend that love to others as well. We look for the bright shining highlights in each other, instead of the behavioral challenges or the confusing differences. We strive for connection and communication even in the most difficult moments, instead of letting those difficulties drive us away. We begin to learn to say, and think, and live, with this perspective: that I am made in the image and likeness of God, and so are you, no matter how different we are from one another; let us meet in the heart and center of that image; let it bind us together in love.

This morning I watched a small microcosm of the kingdom of God play out before me, and my heart was filled to see it.

Differences are so often a cause of fear and suspicion. This person acts and looks and speaks differently than me, so I don’t know how to predict their actions, so I am afraid and want to stay away from them, or I speak more harshly to them because of my unease and discomfort. These people are not like me, so maybe they don’t deserve the same freedoms that I have. An older couple may ask their neighbors why they don’t just keep their children inside, as if because of their age the children have less of a right to access public outdoor space. A concerned citizen may call the police if they see a developmentally delayed adult acting strangely and defend their actions by protesting that the individual should just stay inside their group home if they can’t behave “normally” in public. A group of fairly enlightened founding fathers may preserve slavery and oppress native people because they see them as less capable or even less human. White southerners may institute separate facilities for themselves and legislate others out because they are afraid of being “contaminated” by people of other races. And normally compassionate Americans may applaud strict and trauma-inducing policies of family separation because they are afraid that these immigrants may be lawless criminals and traffickers.

But it doesn’t have to be that way. And we who are parents have the chance to shape the future world into a more understanding and loving place by giving our children the chance, here and now, to experience difference and to see how little it really matter when it comes to living and enjoying life together.