Posted in musings

because it is good to belong somewhere

One of my favorite things about our church is the group of people I’ve gotten to know through the special needs branch of the kids ministry (called Equipped, for future more succinct reference). I’m not one who ever really feels that I belong in any particular group, but it comes close here – at the least, I feel like here are people who desire to understand and support our whole family, and who have a solid foundation and similar experiences on which to build that understanding and support.

To provide a concrete example of what I mean, I skipped our small group’s Christmas get-together (familiar people, familiar place, convenient time of day) because I was worried about the social expectations involved; but I jumped at the chance to go to the Equipped Christmas party (only some familiar people, unfamiliar place, inconvenient time of day) because I knew that whatever behavioral issues came up we would be unconditionally loved and accepted, and because I knew there would be other people there like us potentially dealing with the exact same behaviors and struggles. To be not alone, and for one’s difficulties to be understood and normalized, is an incredible gift.

I think it is for this reason that minorities and people with other differences often find themselves isolated from what could be called the mainstream culture (it may only be mainstream relative to a certain location or culture subset, of course). It is just so much more comfortable for any human being to be around people who are similar to them, with whom they can connect across some significant differentiating and identifying characteristic – and for people who are typically outnumbered or alone in those key characteristics in everyday life, a chance to not be the odd one out is like a breath of fresh air.

It is of course good and important to know how to live in mainstream culture, and it is at least as good and important to understand minority cultures of which one is not a part (I am always thankful for every person who tries to understand autism instead of judging or ignoring it, who isn’t offended by my refusal to participate in Sunday morning “greet your neighbor” moments for instance!), but it is also good to find a place where you can be yourself – and as a parent, to connect with a community where your child can be themselves around other children like them, so they too can have a place and time to no longer feel different and alone. And that is the gift that my church is striving to give to her children with differences and disabilities, all these neurotypical parents seeking to understand and support their children instead of forcing them to hide their true selves and appear “normal”, and it is (even incomplete and imperfect) a beautiful thing.

Posted in musings

stimming for joy

I stimmed today, for the pure joy of it.

I shook my hands back and forth like there was a vibrato in my wrists; I made waves through the air like the swirling lines of a dancing ribbon; I watched my fingers sparkle against the sky.

We were at the park; a storm was rolling in and the air was cool and crisp, with a bite to the wind. I was pushing Aubade and Limerick on the swings, feeling like I could fly with them, happy in the weather and the hours we’d been at the park already and the laughter bubbling from them as they swung. I would run towards them as they flew backwards, then dart backwards out of the way just before they could swing forwards and crash into me, and they would laugh so hard they could hardly catch a breath. Aubade would crow, “Three!” and I would push her three times, each one bigger than the last, so the third push would make her erupt with glee. And as the happiness ran through me it ran to my hands, and I chose to let it be instead of shutting it down, and I found as my hands danced in response to my happiness they also made it grow, until I was as completely blissful as I have ever been as far back as I can remember.

Normally, I have my body on some sort of lockdown – I can feel an impulse to move and then before I even have time to process it there is a counter signal to hold still. Normally, the only things that get through this lockdown are the stims that I need to cope with my anxiety or the stims that occur when I’m thinking hard enough about something else that I don’t notice what my body is doing. In other words, I let my body process and express my negative or neutral emotional states (at least to some extent, because I have learned that it is important for my mental health), but I prevent it from feeling my joy.

I’m starting to think, now, that the stimming of my happiness may also be important for my mental health. I have walked the thought paths of depression for so many years, always feeling inadequate, always feeling like I was carrying a nameless secret that would make people reject me if they found out, always shutting down my happiness from reaching my body so that even the moments of the most joy and beauty were tinged with sorrow. But here my body is ready and waiting to give to me the gift of happiness – of taking my happiness and escalating it, elevating it, prolonging it – able to protect me from the darkness of those roads, if only I am willing to let it do so.

I stimmed today, for the pure joy of it. I hope I can feel free and confident enough to do it again.

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} – why I write about neurodivergence

For this week’s quick takes linkup Kelly wrote about why she and a few other bloggers write about their families and how disability affects them, with some solid insight about the good to be gained from writing and the pitfalls to avoid. I do recommend reading it, especially if you write or are considering writing about your own family! (Key takeaways? Show how the happiness of everyday life is not less because of disability, and don’t overshare about your children’s private issues.) From my perspective, here are several of the reasons that I write as much as I do about my own neurodivergence and Rondel’s autism on this blog (in no particular order).

  1. Writing helps me process life. Since I learned how to write I have consistently found it far easier to coherently express my thoughts in a written format than vocally. My mom and I actually had a journal for writing back and forth to each other when I was around 10 or 11 that we used and that I appreciated a lot! Similarly, my husband and I used Facebook Messenger for most of our serious pre-marital conversations, because the anxiety involved was so much less and the processing time could be longer. Now, I use the blog to help me focus on things I want to remember, organize events as they happen (since I can never remember anything chronological reliably), and fully formulate my thoughts on issues that are important to me.
  2. My son is a human person of innate worth due all the respect that any other person should receive. (Well of course, you should say). But from a lot of the autism rhetoric on the internet, a person could easily come to the conclusion that this is a radical or even untrue statement – and for that reason alone I believe it is essential to write about him and our family in a way that demonstrates his humanity. Some of his actions may not look like what society expects; his developmental timeline may be different than “normal”; and he may struggle with things that most people consider to be trivial inconveniences or perhaps don’t even notice. But those developmental differences do not make him less worthy or less human.
  3. Autistic children grow up to be autistic adults, and they still struggle with things that most people don’t struggle with. So that’s why I write about myself: first so that people can understand why I or other neurodivergent adults may act in certain ways, second so that neurotypical adults don’t trivialize our struggles because they only perceive the slight quirks and oddities that show through our masking, and finally so that younger neurodivergent individuals can see adults like them living and struggling and coping and thriving in the world. We might not be the best at forming in-person communities (and it would be hard anywhere except in a large city anyways), but even just knowing other people like me through the Internet has been hugely encouraging and enlightening; I’d love to be able to extend that gift to someone else.
  4. As a corollary to this, it has been especially difficult for me to find a community of Christian autistic/neurodivergent adults, particularly women. There is one in my small group which is amazing – I don’t recall having had that kind of connection in an adult friendship before – but other than that there are just a couple blogs that’s I’ve found. I would love to both share how I live my faith as a neurodivergent individual and help the church deepen its understanding of neurodivergent individuals, and maybe I can start small here.
  5. Sometimes I find things that I want to share, and the blog is an easier way for me to share them than on Facebook, where it is so easy to hurt feelings. See this link for an example: Ink and Daggers: Small Talk (trigger warnings for ableism, child abuse, and language).
  6. I can’t think fast enough in conversation to discuss things that are close to my heart. I struggle to read my companion’s reactions, to gauge where next to move the discussion, to know how to change the subject without giving them my agreement, to be passionate without getting emotional and losing the words I need most. I wish I could tell everyone about neurodivergence, to promote acceptance instead of toxic awareness, to advocate for myself and Rondel and other people who are hurt daily by the ableist assumption that they are less because they are not normal, to help people to understand instead of pathologize autistic behavior. But I just cannot manage all the little things required by conversation while a high-stakes, emotionally-charged issue is the topic; it never ends well. Instead I write, and maybe my words will reach eyes that need to read them instead of ears that need to hear them.
  7. Finally, this story is all-too-common among people whose differences were seen purely as deficits, whose superficial abnormalities were trained out of them but who were never given coping skills for their deeper struggles, who were only ever valued for appearing normal and never praised for their unique abilities. This is not my story, because I was blessed with parents who always sought to understand and support, but it is a story I have read time and time again in the online adult autistic community. I write to try to create, with my words, a world in which this is not the norm for autistic children. (Is it the norm, you ask? Surely it can’t be that bad? Well, it is the result of therapeutic practices condoned by major groups such as Autism Speaks and the Judge Rotenberg Center, so it is definitely mainstream. I am hoping it is becoming less common, of course.) I write also to share those more painful and disturbing stories – and the principles gleaned from them – so that fewer people can say, “oh, I didn’t know!” as an excuse for their inaction and indifference.
Posted in musings

making accommodations for myself

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, sqt

{sqt} – solo parenting, friends, and broken AC in the summer

It’s been a different sort of week over here! For the Seven Quick Takes link-up with Kelly, here are some of the highlights:

  1. Limerick has been so tired, every day. We went to the zoo on Monday at his request, and he was so tired that he asked to go home every 30 minutes. He napped on Sunday and Monday (which he never does), and has been so tired in the evenings that he struggles to get through swim lessons despite loving and enjoying them. I don’t know if he just isn’t sleeping well at night, or if he has some sort of vitamin/mineral deficiency (thinking about iron specifically). He also hasn’t been eating much, but that isn’t a new thing; compared to the other two he has never been a big eater. His four-year well check is in just two months so for now my plan is to try to get him in bed earlier and facilitate naps when possible.
  2. Paul went up to Prescott for his first business-related trip this week! He even got to deliver a short presentation at the conference! Aubade is definitely missing him though, and while it sometimes seems like the boys don’t care whether he is here or not, Rondel has told me several times that he wishes Daddy were back. There’s something special about getting to share everything with him at the end of the day when he comes from work.
  3. Corollary to take 3, I’ve been doing bedtime for all three kids instead of splitting the responsibility with Paul; the first night Aubade got to fall asleep on her own while I put the boys down, and the second night the boys got to fall asleep on their own while I put Aubade down. I can’t recall any previous night where I have left their bedroom and they have fallen asleep without tears or trying to follow me out, but this time they were out in less than fifteen minutes without any complaints. It was amazing (and so needed, as Aubade was having a really hard time).
  4. We had a playdate with a new family I met online through an unschooling group! It was really neat to watch Rondel running around with a kid around his same age, both of them being monsters and hand-flapping and trying to climb crazy rope ladders and getting scared and not really talking to each other but definitely playing together. A couple weeks ago a younger girl we know from church made a comment about Rondel chewing on his shirt (it’s one of his stims, and a pretty innocuous one honestly) and that being kind of weird or gross; this new friend didn’t see a problem with it at all (and in fact I noticed her experiment with chewing on the collar of her shirt as well). So that was also really encouraging to me, as I’m trying to find friends among whom Rondel can fit in while being himself.
  5. Random thought of the week – why do so many people make such a big deal out of autistic kids lining up their toys? I mean, is it really so strange? I think some behaviorists see it as “abnormal” play, or play reflecting a lack of imagination, but I don’t know how accurate that is. I know when Rondel lines up his toys, it is usually because they are on some sort of migration. I also know that my mom used to line up toy cars and drive them on parade as a child, and that my daughter likes to line her toys to display them – and they are both neurotypical. There is just something so nice about a line, especially as opposed to a pile…
    IMG_0624
    image is of a blond toddler sitting on a curb against a wall, head turned towards a line of toy Triceratops also on the curb. She was very particular about only selecting the Triceratops from the dinosaur box…

     

  6. Both boys mastered the “l” sound and the “tw” sound this week! When they are counting, eleven and twelve come out far clearer than before. I am so proud of the effort they’ve put into it, and they are so pleased with their newfound ability 🙂 Rondel still has moments where he doesn’t want to try to say sounds the correct way, because it’s hard and he thinks he can’t do it, but he tries often enough that he’s improving. Limerick tries no matter what, and he’s improving in leaps and bounds. Hopefully soon they’ll have their pronouns completely straightened out as well – it really confuses strangers and other children when they use “you” to refer to themselves.
  7. We had one random day of rainy cool weather this week – the high was in the mid-80s instead of around 100 where it has been hovering – and very conveniently our AC decided to break that evening after everything was cooled down already. It was rather dramatic: I was out back playing with the boys after sunset, when we heard a loud pop and saw sparks on the roof. I tried to turn on the AC to test it (and to bring the temperature down from 83 to 80 for bed), and nothing happened. It turns out a poor-quality wire had been rubbing on a piece of metal long enough that the insulation wore away and the humidity in the air enabled an arc to form between the two, shorting the wire and blowing a fuse. Fortunately, since the highs are going back up to 100, it was a quick and easy fix and we had AC by the time the external temperatures reached 90. But, as the AC repairman warned us, it is an old unit that has had some shoddy repair work done in the past, so we’ll most likely need to replace it in the next 2-3 years. Ah home ownership 🙂

I hope you all had a great week, whether it fell into the swing of your normal routines or stretched them a bit out of shape! And I hope that you are finding friends – or keeping friends – who love you and accept you just the way you are. Those types of friends can be hard to find, and they really are as precious as silver and gold.

Posted in family life, sqt

{sqt} – finding community and playing board games

I’m linking up with This Ain’t the Lyceum again today for seven quick takes! I’ve had a bit of writer’s block this week and having a format laid out for me helps get the words flowing again 🙂

  1. I’ve been feeling a lot more isolated lately. Rondel (and even Limerick) are older than the kids who show up to the weekly church playgroup, all of their friends from church are in school or therapy most of the time, and I’m having trouble finding a homeschool group that is relaxed enough to accommodate our family’s needs. I mean, field trips and classes aren’t going to help the boys make friends, and park days where the kids are expected to play away from the adults is going to be hard with the little kids (and Rondel’s tendency to zone out and lose track of where he is and how to find his way back to me). And honestly, I don’t need a whole group, just one or two families who can walk through life with us right now.
  2. Sometimes I think our family falls into so many different/radical/tiny niche categories that I will never find anyone who really gets it on all levels. There’s the large “autism family” blanket – but oh wait, they don’t know how to handle an autistic parent, and they tend to support ABA therapies that are described as abusive by a lot of autistic adults who have experienced them (perks of an adult diagnosis here…). There’s the homeschool blanket – but we are using ESA funds from the state to help pay for speech therapy and curriculum, which puts us in a special legal category, and is apparently reason enough for several of the larger state groups to exclude us. And we’re Christian of course, but I’m uncomfortable in a lot of the Christian homeschooling circles (they can swing fundamentalist and Calvinist), and I want my kids to be exposed to the diversity of ideas and backgrounds that a secular group might offer – but I still want them to know (and hopefully believe) what I believe to be true about God. I could try to get all the pieces in different places but that is so much socializing and I don’t think I can handle that many people/groups/acquaintances!
  3. Mostly I just want Rondel to find a best friend. He told me he would like to play more with other kids but he ends up just watching them and doing his own thing a lot of the time because he isn’t sure how to join in. And I don’t know how to help him 😦 I just sort of clung to my best friend through most of childhood and depended on her to navigate social events. So I keep hoping he will meet someone to be that kind of friend… if you are ever wanting to pray for our family, that would be at the top of my list right now.
  4. In other news, we have been making more and more board games until they seem to be everywhere. We have number boards up to 100, 195, 223, and 550 (Limerick keeps requesting more and more numbers with smaller and smaller squares, but I think 550 is the limit even using our smallest game pieces). We have a traditional path-format board game with colored squares, a spiral snake with colored squares, a loop board game with the letters of the alphabet, and most recently a sting ray-shaped board with a colored path twisting along his body. My favorite game is called “LEGO Monsters” and we play it on path or spiral snake boards: each square gets one or two LEGO pieces of the same color as the square, and if a player’s piece lands on a square they get to collect the pieces and use them to build a monster. We all start with a head and eyes to make sure we aren’t missing those crucial elements, and we end up with some crazy creations! This game also has the advantage of removing the winning/losing element 🙂
  5. While I may get tired of playing the board games all day long, I have to admit they were the cause of the least stressful visit we have ever had to the pediatrician. Usually the boys have a lot of trouble keeping their hands off of things, leaving the light on, staying quiet when the doctor is talking, and so on – but this time they each brought a board game and were able to play contentedly even though we had to wait quite a while (not due to any fault of the doctor; Aubade has a UTI and we had to wait for her to pee so they could test it). Even the doctor complimented them on how well they behaved, which is definitely a first at this office!
  6. Another side effect of the board games is that Limerick is beginning to internalize a lot of the numbers and their relationships. He can do quite a bit of addition now without having to count to make sure, especially with numbers 1-6 (thank you dice) but also with larger numbers because of his number boards. It’s neat to see his understanding of the numbers deepen – when I watch him think about the sum of his three dice, for instance, or about what number he’ll be moving to after adding his roll to his current position, I can almost see him manipulating the numbers in his head, breaking them up and recombining them, becoming friends with them.
  7. And finally, we have been counting. Counting and counting and counting. We drove to church and Rondel counted the whole time drive and all the way to Sunday School (he made it to 1025). We drove to speech therapy and Rondel almost cried when we asked him to take a break from counting for his appointment and pick up again afterwards (poor guy – it is hard to stop when you’re in the middle of something and going strong!). I’m not sure what he likes about it, since he isn’t nearly as in love with numbers as Limerick, but hey, he’s never going to forget those numbers now!

How has your week been? Do you have tips for making connections and building community? How about any favorite board games (non-competitive games in particular)?