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

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 musings

pastor barbara and the out-of-sync girl

Once upon a time there was a church which had a female pastor. Now, this pastor wasn’t the lead pastor, or even the primary teaching pastor; she led the family and children’s ministries, actually, and spent most of her ministry time with women and youth. But she had the title of pastor – Pastor Barbara.

She was beautiful. She had long, curly brown hair and a nose with that perfect spark of defiance bringing its straight lines singing up from her face. She had a gentle way of moving – never too fast or too sudden – and a gentle way of speaking – never too loud or too harsh. And when she saw the children she loved and taught and prayed for, her whole body would glow with that love and light, like an emanation of the Holy Spirit through her presence.

There was a small girl at this church who adored Pastor Barbara wholeheartedly and unstintingly, although mostly from a distance as she was a quiet child. She enjoyed above all the new songs that Pastor Barbara would sing with them! For her, songs were a release from the uncertainty of social interactions, because the songs (at least the children’s songs that she knew) would specify how you were supposed to act. Take for example “Father Abraham:” no one would ever move that way in everyday life, but the song says to do it so everyone does it and no one has to worry about being out of sync.

Continue reading “pastor barbara and the out-of-sync girl”

Posted in family life

a run-in with special needs services

A few weeks ago, while I was nursing Aubade in the mom’s room just off of the church sanctuary, I received a text on my phone asking me to please come to where I had dropped Rondel off for class.

This was highly disconcerting. I have known for years that Rondel struggles sometimes in the class environment; I’m not sure if it is the structure, the people, or the noise, but something about it can be difficult for him. Some weeks he’s protested about having to go to church at all, and threatened to hit or kick the other kids; some weeks he’s come out of class and told us about all the things he didn’t like. Other weeks he’s come out full of excited news about the toys he played with or the snacks he ate, however, so it has never been all bad. And this particular Sunday I wasn’t expecting anything to happen, because Rondel had told me on the way in that he was going to do well in class and was looking forward to the story.

When I reached his classroom, a woman I’d never met before introduced herself to me as the leader of the special needs branch of the kids ministry at our church, and told me what had happened: Rondel, perhaps overwhelmed by the chaos of class, the lack of individual adult direction and attention, or the noise of the worship music portion, tried several times to run away from the classroom. Since the kids were in the big music room at this point (all the older classrooms come together for a worship time in the middle of the hour), this woman had been present as well and had assisted Rondel’s classroom leaders in keeping him safe by taking him to the sensory classroom until he was able to calm down. By the time she showed me to that classroom, Rondel was happily and calmly playing with one of the pastor’s daughters, a sweet little girl with autism.

This triggered a cascade of events. Rondel’s teachers told me that they are normally able to accommodate him in the regular classroom because they typically have three adults and one can focus more on helping Rondel cope with the structure, the stimuli, and his own emotional reactions. Apparently this week it was especially difficult because there were only two adults in his classroom, and while the adult to child ratio was the same, they weren’t able to give him the focused attention he needs. So while this is the first time he’d actively tried to run away and needed to be diverted for his own safety, he doesn’t handle the classroom environment like most of the other children can. I’m sure that was hard for his teachers, and I’m equally sure it was hard for him, and was contributing to his complaints about church. Something needed to give.

J., the woman who directed the special needs ministry, set up a meeting with us the following week and asked us to fill out a questionnaire online. After talking it over, we agreed that for now we’d like it if Rondel could continue going to the sensory classroom each week, so that he could still hear the story, learn about God, and engage with other kids, without the stress and discomfort of the normal classroom getting in the way. The last thing I want is for him to associate church with anxiety and stress – and if he’s having to work that hard at emotional regulation the whole time, he’s not going to be learning anything else anyway. Eventually we’d like him to try to integrate back into his regular classroom with a “buddy” – a designated adult volunteer who helps prepare him for class beforehand and stays with him the whole time to help him with focus, impulse control, emotional reactivity, stimulation, and so on. We’re waiting for a few more volunteers though; I think we’re the third family in line for a buddy 🙂

In the meantime, I’ve already seen a marked change in Rondel on Sunday mornings. I asked him which classroom he’d like to go to and when he answered that he’d prefer the sensory classroom I asked him what he liked about it. After describing the swing and how he can push himself, the beanbags that he can crash into, and the Duplos he can build with, he said, “And I like the other kids there.”

I’ve never heard him say that about a group of children before, besides his cousins.

In just two weeks with this ministry my little social boy, my hypersensitive extrovert, had finally found a place where he could be himself around other kids and still fit in and make friends. He had gone from threatening to hurt and fight with the other kids to telling me how much he liked them, even remembering one of them by name.

I don’t know how all of this will play out in the long run. It’s made me simultaneously more worried and more reassured – worried, because what if something is wrong inside Rondel’s brain that is going to make his whole life more challenging for him; and reassured, because it feels like validation of what I’ve been feeling Rondel’s whole life, that something is just a bit different for him, and because I know there are people on our side in this, rooting for him and supporting him. Whatever does happen in the future, however, Rondel and I are abundantly blessed in this moment to be receiving the unconditional love – giving, serving, and non-judgmental – of the body of Christ through our local church. And for that I am unequivocally thankful.

Posted in family life

on the first day of Advent…

Thanksgiving pictures will be up a little late because I forgot my camera at my in-laws’ house and will have to wait a few days for it to be returned (my FIL fortunately works fairly close to our house, despite living rather far away – I don’t envy his daily commute).

However, life in our house has moved on from Thanksgiving to Advent with what feels like incredible speed. The downtown area where we live is fully decked out for Christmas, with a whole street blocked off for a three-story Christmas tree, photo ops, and continuously-playing holiday music. Even our church this morning (to my disappointment) was fully decorated and singing Christmas carols all service long, and I honestly felt overwhelmed by it all. I love Christmas – don’t get me wrong! – but I love Advent even more, and the abrupt switch from ordinary time to Christmas, without the slow build-up and growing anticipation of Advent in between, made me feel like Christmas was just being dumped on me at the expense of the specialness and wonder of it all. I can’t remember feeling like this in the past; for some reason I am just not ready for Christmas this year, and I’m hardly even ready for Advent. I need time to live the lamentation and longing of Advent, to prepare my heart for the unbelievable joy and promise of Christmas… maybe I just need to spend time alone in the daily readings for these next few weeks, immersing myself in the pattern and calling of the Church.

For now, though, I did bring out a few decorations and the Advent wreath (and discovered that I only had two whole candles, one purple and one rose, along with five or six candle stumps… ah well, our Advent may be interrupted by the baby anyway!). I had hoped to do the Jesse Tree this year with the boys, but I didn’t find/make a set of ornaments I liked in time, so we’ll just be reading the stories without the visible accompaniment. I did find a great children’s Bible with beautiful, well-written stories that are still short enough to easily add to dinner and the Advent candles, so we’ll be using that for our Advent readings as a family and keeping the Jesus Storybook Bible in regular circulation with our picture books – Rondel has been choosing it for his bedtime story for a few weeks now, and I don’t want that to stop! Anyway, this is our new one:

cogsb

The illustrations are done by different artists from around the world, and represent different artistic styles as well as different ethnicities and cultures – and they are all absolutely beautiful. I’ve read quite a few of the short (two to three page) stories on my own, and read the first one tonight at dinner; I’m looking forward to the rest! I’m especially excited that Ruth and Esther are both included here, as they are not in the Jesus Storybook Bible.

One thing that gave me hope for the season in the face of my own lackluster feelings so far was Rondel’s reaction to helping me pull out some preliminary Christmas decorations, and finding our nativity set amongst them. My plan was to introduce the characters slowly throughout Advent, like I did last year… but Rondel spent the whole afternoon playing with the people (pretending they were random Bible characters like King Darius and Daniel because we haven’t read the Christmas story for a while!) and chose the baby Jesus for his bedtime snuggle toy tonight. So that was significantly sweeter than my well-laid plans would have likely been, and a gift for me to see his delight in the season even if it isn’t rolling out perfectly and liturgically correctly. My goal is to meet him in that joy, and make the most of the Advent time we have before our baby comes, instead of morphing into my inner curmudgeon…

I hope your Thanksgiving went well and that you are entering Advent with a more Christ-centered and joyful heart than I have had so far!

Posted in musings

to the “difficult” kids

From eighth grade through college I volunteered every Wednesday night with the Awana program at my church, with the K-2nd grade kids. I loved it for so many reasons 🙂 But what I came to realize through that experience, as well as through the summers I spent as a camp counselor, is that my favorite children were almost always the difficult ones, the trouble-makers, the strong-willed and stubborn kids, the insecure and struggling kids acting out without even knowing why. They seemed to live in turbulent waters, when most of their peers were coasting by around them; the behaviors that should have been perceived as a plea for attention, connection, and love all too often simply served to push other people away from them. And I loved these kids, and sought to connect with them, and trained my defensive instincts in their behalf.

Then I became a mother, and one of these kids was my own child.

And I realized that no matter how much I had cared about those other kids, and gone through hard things with them and for them, I had never come close to loving them like I love my son. I had stood up for them against the negative perceptions their behaviors had led to – but I had never felt that primal physical rage in their defense that I feel when someone makes even the slightest off-hand comment disparaging my child. I wish I had loved them better. I wish I had been a fiercer advocate for them; I wish my heart had been more easily broken for them, my life more freely poured out for them. Because I know now, and I knew then, so I had no excuse, that most adults will see the negative behavior and never look past it to the child who may be scared, overwhelmed, overstimulated, uncomfortable, and just simply in need of love and guidance.

When does your heart bleed, as a mother of a needy child, a socially awkward child, a child who doesn’t fit in without that extra love and care?

– when you watch your son “playing” with a group of peers, and they’re all busily climbing and digging and talking and investigating the world, and he’s sitting on the side just holding a toy and watching them, trying to figure out what’s going on, like they all know this social script that he’s never heard of

– when you come to pick your child up from Sunday School and he’s trying to break into a circle of kids building, to be part of the group, and one of them says, “oh good, he’s going home!” when she sees him running to you

– when you glance at the activity/story pages coming home with your son and the only personalized comment is that he played with his tongue.

In the moment I read that comment I knew only two things:

  1. Since when does an adult who claims to love and represent Christ think it is ok to fixate on a “weird” behavior that a child has to the exclusion of all that child is as a person created in the image of God? Also, did they think they were enlightening me or something? Believe me, random childcare helper, I know my son better than you do. I know that he licks his hands when he’s overstimulated by the noise and chaos of a group of kids, when he’s trying to figure out social cues, when he’s excited by everything going on around him or worn out from processing a hundred different things at once. You don’t need to fill me in on that piece of information.
  2. One callous and ignorant comment is not sufficient justification to leave a church, no matter how strongly I wanted to in the visceral rage of my first reaction.

I just want the world to know that the kids who seem different or difficult are beautiful, funny, intelligent, sweet, unique individuals – just like the ones who fit in, make friends easily, listen well, and charm you with their good behavior. You just need to see them for who they are, to see the person who needs and struggles and wants to be loved, instead of stopping at the outward web of odd or negative behaviors.

Posted in musings

“closed-hand” issues and confusing terms – a quibble with my pastor

In church on Sunday our pastor was distinguishing between what he called “closed-hand” issues (what C.S. Lewis might have termed Mere Christianity, the essential doctrines of the faith) and “open-hand” issues (points that aren’t clearly taught in Scripture and about which Christians are free to disagree, like the details of the end times or evolution). I was nodding along with him, as this is familiar territory for me, expecting him to take it in a truly ecumenical Lewisian fashion, when he suddenly burst out sola scriptura as a core, essential, inarguable tenet of the faith.

Excuse me?

I’d like to give him the benefit of the doubt, and suggest that he simply meant to say that Scripture is inerrant and authoritative, the primary guide for our faith, because I don’t think any Christian group through the millennia of the Church would disagree. But what he actually said was that Scripture is the sole authority for the faith and for Christian living – and that is not Biblically taught and was not held by the Church for the majority of her existence. Logically, this makes sense. The Bible can interpreted in a million ways, some of them drastically different and leading towards widely varied ends, so as a sole authority it doesn’t seem to be very well-suited for keeping either orthodoxy or orthopraxy intact. There has to be some way to determine which interpretations are valid and which are heretical, and since Jesus is no longer living on earth to deliver those kind of judgments, it would make sense for the authorities within the Church, led by the Holy Spirit, to have that kind of authority.

If the Church isn’t led by the Holy Spirit, than to trust her authority and direction on the interpretation of Scripture would obviously be a dicey matter, no different than turning to any random person on the street and following their opinion. But we do see in the Bible Jesus promising to send the Holy Spirit to remind the apostles of everything He taught; we see the Spirit coming down with power and transforming the apostles and other believers; we see the early church following the decisions of the apostles as to which laws and traditions to live by. Was that just because they didn’t have a written Bible yet? Did all those councils and traditions and oral decisions become unnecessary once the Bible was assembled? Considering the number of heresies and divisions that have arisen in the 16 centuries since then, I don’t think so. We still need a person, or people, led by God, to clear up arguments and prevent error from creeping in to our understanding of the inerrant Word.

So please be more clear, pastor, about your terms and definitions. Please try not to exclude the vast majority of Christians throughout time and space from your tight definition of the “closed-hand” issues one must believe to be truly Christian by narrowing down the broad historically-accepted truth into your Protestant doctrine, which may or may not be true (I’d love to hear your arguments for it!) but which is most definitely not universally believed by even the great Christians of the past.