Neurodivergence and missionary families

Here's one definition of this term that has become popular in the last few years:

Neurodivergence refers to any difference in the way our brain works, processes information, and interacts with the world around us. This umbrella term includes autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), dyslexia, learning disabilities, Asperger's syndrome, and more (from here).

Image by Gordon Johnson from Pixabay

I was proud to learn that the term was coined by an Australian sociologist. And only four years ago! So it's a very new word and one that I like a lot because it's so helpful and positive.

Our family has been influenced by neurodivergence from quite early on, and the particular brand we've been dealing with is ASD, of the "Asperger" type.

Recently a colleague, who also has parented a neurodivergent child through to adulthood, was asked to address the topic with a group of missionary leaders who help our mission take care of the kids and families in our organisation. She asked about our experience and for any recommendations we'd have for resources. We ended up talking about some of our experiences and, with the benefit of hindsight, I wanted to share with you something of what it is like as a missionary family dealing with kids who don't fit into the neurotypical box.

It's hard on many fronts.

Diagnosis

It's not always clear what's going on when you're raising a child who doesn't fit the "norm." It can be even harder when you aren't in your home country, because it isn't always clear what the "norm" is. For example, if your child is in a local school overseas, every day they are dealing with more than one language and culture. Moving from your home to school and back again represents crossing cultures each time. It might not be clear exactly what the trouble is: it could be linguistic or not understanding the culture of the kids they are with or even a lack of friends. Or it could be that the teachers have never dealt with a child who isn't a local, and don't know what to do, or how to communicate with you or your child. Schools in different countries are very different. Or, your child could be in a small international school with few resources, or you could be homeschooling them an have no training in recognising neurodivergence.

The other challenge with getting a diagnosis is finding someone to do that. In Japan neurodivergence isn't well understood, not to mention doing an assessment in Japanese wouldn't have worked so well for our boys who haven't become fluent in the language. So, getting a diagnosis was easier when we were in Australia. We're fortunate to be in a big city in Japan where we've had access to an American-trained psychologist, but that isn't often the case for missionaries. And even then, at one point we had to have a reassessment done in Australia because a diagnosis by a paediatrician is required in our home country.

Resources and services

Missionaries often have limited access to the sorts of resources and services that their peers in their home countries might take for granted. Although from what I've heard, even in home countries, parents of neurodivergent kids often have to advocate hard to get services for their kids, especially kids who are higher functioning. Missionaries are even more on their own. Thankfully more resources are available online these days, so it is pretty easy to access support groups and tonnes of information, even if you can't access person-to-person services for your kids.

Schooling

Education choices are more limited when you're serving overseas; they are also more complicated. And that's for neurotypical kids. If your kids don't fit into that box, then it's even more difficult. We know colleagues who have ended up homeschooling and numerous others who've had to return to their home countries permanently.

And then there's home assignment. It involves changing schools (and churches, homes, friends, food, and general environment), not to mention changing cultures. No one finds this easy. It involves a lot of transition, which is something kids on the Autistic spectrum don't deal with well, but I suspect other kids who are neurodivergent also do it tough.

Behaviour

Somehow missionary kids are expected to be well behaved, just like pastor's kids. Even though we all know that children are flawed individuals, we (adults in general) still have these expectations. Missionaries often feel like we live in a bit of a glass house. 

We write regular newsletters. Parents of neurodivergent kids carefully select the bits they're comfortable sharing and that they think will be favourably received. But I think this is true of missionaries in general. Of course wisdom is always needed in what you share with anyone— too much isn't good, but neither is being too selective. And prayer letters are public communications: we never know who will read them. Most missionaries have received unhelpful advice from people who think they understand our situation and our kids, but don't really. We generally share more details with a smaller group of close friends. But we need to share something with the wider audience so that they can pray and also so that we have some accountability, because this is where much of our income is coming from. But as you can imagine, these communication decisions aren't easy to make.

And then we go on home assignment, when we're even more on display as a family. When our children are younger we "drag" them around to various speaking appointments, and at each place, there are unspoken expectations. The worst are, unfortunately, usually Sunday morning church services, where kids are expected to sit quietly in a strange-to-them building brushing shoulders with strangers, and then afterwards be pleasant to anyone who chooses to talk to them. As a parent in that situation, we feel the pressure to be advocates for our kids, on top of all the other responsibilities that come with being the "visiting missionary". It's exhausting.

We've got many sad memories of the difficulty of getting our kids seated in a crowded church, of awkward whispered conversations with people who assumed our kids would join the Sunday School, or even a child who refused to get out of the car and come into church at all. And then the difficulties of staying in other people's homes: relatives, friends, and strangers. So many unspoken expectations surround situations like that, including conversation, politeness, and even that two children will share a room willingly. And all the while, feeling like our kids and observations of our parenting are somehow part of a report card on our fitness as missionaries. That's a lot of uncomfortable pressure.

So, this all sounds rather negative. I do need to tell you, though, that we've made it through. We've spent the last 22 ½ years raising our boys (mostly) in Japan, and we've gotten them all through to officially being adults. And each of them has finished (or is about to) high school. We know that that's not the end of our involvement in their lives, and that each of them has much more growing to do as people, but by God's amazing grace, we've made it this far, and we look forward to seeing where they go and what they do in the future.

Have there been times when we thought it would be better to be doing this in Australia? Yes. The big challenge of parenting is that not only do you not know how things are going to turn out, you don't get any "redos" or "practice runs". You have to make decisions based on the information you currently have to hand and the wise people you have surrounding you. As Christians you also take your hard situations to God in prayer and ask for his wisdom, trusting that he will guide you.

God's power for the weak

I was encouraged this week by a reminder of God's great power for his children. The same power that he used to raise Christ from the dead. 

It's mentioned in Philippians 3: 10–11 and in Ephesians 1:19–20: "His incomparably great power for us who believe. That power is the same as the mighty strength he exerted when he raised Christ from the dead and seated him at his right hand in the heavenly realms" (NIV).

And Paul, the writer of both those passages also says, "But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus" (Phil. 3:13–14 NIV).

I can't finish a blog post about parenting without telling you the "parenting" verse that's helped me persevere through the years:

"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up" (Gal. 6:9 NIV).

Faulty thinking

Ah, how easily we fall into cause-and-effect thinking, you know, the kind of thinking that goes like: "If I do all the right things, it will turn out okay." It works for some things, but that kind of thinking gets to be very unhelpful when it overflows into things like illness, relationship breakdown, employment loss, and other aspects of our imperfect lives in this imperfect world. Of course you can cause breakdowns in these areas, but there is a surprising amount of stuff that you simply can't control by "being good". Yet we still act as though we can.

Getting some perspective

I've seen parents going out of their minds trying to do a perfect job of parenting. From prior to conception, potential parents are bombarded with "rules" as to how to be the perfect parent. I saw a reel the other day telling me that I should have played a special soothing song to my sons before they were born . . . that we would have had a better time with them as newborns! 

We're told that during the school years to make sure they have plenty of exercise, or to learn an instrument or a language, or to have lots of down time, or to read to them often. And it's implied that they should have perfect behaviour at school and excellent school results, that we need to make sure they've got all their homework done on time and ensure they have time with friends too, not to mention a perfect diet.

Parents are told to develop family traditions and give our kids the best examples. Christian families have a lot of expectations on them too, from family and personal devotions, to church and Youth Group attendance. And of course this isn't new.

Some of our motivation is most likely fuelled by the thought: I will be blessed if I do this. Such is the strength of the myth: "bad things don't happen to good people". And therefore I have to do all in my power to be the best person I can be. And when you're a parent, that puts an awful amount of pressure on you, especially if things go wrong. Sadly many Christian parenting books seem to champion this flawed thinking and seem to completely forget about God's grace. 

When bad things happen, the logical conclusion when you're thinking this way is that "it's my fault" or you start looking around for someone else to blame. But that isn't always the case. How often do we look at others struggling with their children in public and silently judge them, wondering what they did to deserve such misery. And how miserable people are when their kids go off in directions their parents don't want them to or don't take the "expected path". 

So many expectations and so much misery.

People in more prominent positions, like pastors and missionaries suffer too, and possibly more. The expectations seem higher when there are a lot of people watching you.

My husband and I are watching the fifth season of The Crown. It's a historical-fiction series about British royal family and they're currently covering the 1990s, when the family suffered a number of marriage breakdowns, as well as other hardships. The Queen actually publicly described 1992 as her "annus horribilis." We can barely imagine what it's like to live such a high profile life, but you can see the same pattern: perfection is aimed at, failed to be achieved, and people feel the need to blame. A cause-and-effect thought pattern that works well in some aspects of our world, but not so well in others.

Over the last few years we've personally been in a season of "walking beside" our older teens/young adults as they go through difficult times. It's been hard, and we've had to let go of our expectations (many we didn't realise we even had) and seek to find ways to love them unconditionally as well as encourage them.

Those of us who follow the God of the Bible need to be careful. We have a tendency to try to do deals with God: if I'm good, you have to bless me with a hardship-free life. Even if we don't think we think that way, it can so easily slip in. For example, thinking: if I pray hard about something God will have to do something good. If I get parenting right, then my kids will turn out right (turning Proverbs 22:6 into a promise instead of just wise advice: "Train up a child in the way they should go, and when they are old they will not depart from it.")

I was encouraged by a sermon I listened to the other day. The preacher, who has gone through plenty of hardship himself said: "The good news is that you cannot be bad enough to ensure God's condemnation of your family." And "the bad news is that you cannot be good enough to ensure God's blessing on your family . . . the future of your family, for good or ill, is in the hands of God." He finished by asking: What hope is there? Turn to the One who holds the future in his hands and ask him to honour himself through your family. God uses our messes: just look at Jesus' genealogy, it's full of broken families!

This is not an encouragement to be slack, but rather an encouragement to cut yourself some slack. Things will go wrong, when they do, it's not necessarily your fault. And the same for how you quietly think about those around you. 

I've struggled to get my thoughts down on this topic and press Publish. But I hope that it's as helpful to you as it's been to me to think about these things.

The truth about journeying with illness that isn’t physical

Monday was international mental health awareness day and as this is something that has become part of my family's life over the last few years, I have been pondering how to write about it. I'm hesitant, but last week I was encouraged by two separate people within an hour of one another, that telling our stories is valuable and important, something I know, but need reminding of occasionally. And another person on the same day asked about my writing. All of this was a reminder that God has given me a gift for writing, so I should use it, even when it is a little bit scary. For though I’ve talked to various people about portions of the journey that our family have been on with mental illness, writing it in a public forum is a different level. I’m scared to hit publish on this post!

Until mental illness became part of my own family's story, I knew little about it. Though possibly I knew more than some as my university degree touched on it. But I consciously tried to stay as far away from having to interact with this topic and this “scene” as I could, until it appeared under my own roof and I couldn't run any more. I’m writing for those of you who have no experience of living with someone with a mental illness, that you might know some of the struggles we have. But I also write for the other parents out there who are quietly, perhaps silently, struggling.

I recently got quite upset when someone wrote on their social media page that they'd never heard a negative comment about their child. It's difficult to imagine a life like that. I'd like to be someone who hasn't had to talk to teachers about their child's behaviour (behaviour that stemmed from a neurodevelopmental disorder and mental illness). I'd like to be someone who hasn't had to take their child to a psychologist for an assessment and had a diagnosis (or several) presented to them. I'd like to be someone who hasn't had to research psychiatric drugs and sit in a psychiatrist's office.

I'm scarred because I've heard mothers of classmates of my son say things that show they don't understand their kids are barely aware that my son is in their class, let alone that he’s struggling. And I’m wounded because another mother told me she'd hate to have a child with a disability. So

This little plant is thriving in a hard place. That's what I want to see me and my family doing too. 

I hesitate to share about our experience because I know there are people out there who simply aren't interested in understanding.

But what I was most sad about when I started this blog post the other day is that someone may think that they have never heard a negative thing about their child because they are great parents and have, in their own power and strength, raised amazing children.

I know that I haven't been a perfect parent and that my kids have not had a perfect childhood, but I can't allow myself to be ashamed that they've struggled. That we've struggled as a family. A lot of what's happened isn't my fault, and nor is it the fault of my children.

I wish I didn't have the knowledge that suicidal thoughts are part of one of my son's experience. I wish that another of my sons hadn't had someone close to him take her life.

I wish that our dinner times had been ones of great conversation and connection over the years. We’ve often struggled, and it’s not because we don’t value that time. We’ve tried, really hard, every day, but dinners are still often a struggle. Polite conversation is not something everyone does well, or happily. I wish I could say I hadn’t felt judged because of my kids’ social skills.

Mental illness in a teenager is difficult because it is very often not easy to diagnose. It masquerades as a lack of motivation, as belligerence, as disobedience, as stubbornness, or a lack of confidence, and many other ways that look like behavioural issues, not illness.

For example: Is not sitting with anyone at lunchtime at school worthy of concern? Are they shy and prefer their own company, or do they lack the same interests or social skills as other children, are they the victim of bullying, or are they socially anxious, or do the sounds that other people make when they eat bother them? As they get older: not being able to get assignments in on time: is that just poor organisation, or is it because they have trouble concentrating, or are they depressed and struggling with motivation? Or is the effort just to get out of the house and interact with others through the day draining them of all the energy they have and there’s none left for doing difficult assignments?

I wish I was someone who could talk freely with my son about future plans. Plans for college or work; about the big, hairy audacious goals that some young people have. For several years we’ve struggled to talk to him about the next week. Anxiety takes a toll and makes planning for the next day hard, let alone planning for the start of life after high school.

As a parent of someone with mental illness, I've had to be hypervigilant at times (and I know that is the case for some parents of kids with other disorders also, like epilepsy and some kids on the Autistic Spectrum). Hypervigilance is exhausting. It's a hidden hurdle a parent must overcome to participate in daily life outside the home. If you have to be hypervigilant, it's important to take care of yourself and please don't feel you have to make excuses.

Mental illness in your house means you become a buffer between your child and the rest of the world. An advocate too, if you choose to be. I've had to spend a lot of time explaining our son and our family to others. Explaining why my son isn't getting out of bed at an "appropriate" time, explaining why he's wearing headphones, or why he's hitting his head. I've had to explain why he's not participating in polite dinner conversation or why he won't share a bedroom with his brother when we're traveling.

We've had to adjust our family's life and our parenting in so many big and small ways, it is hard to even remember them all now because many have become instinctual. It's only when other people see us behaving in a way they don't think is normal that we remember (and may have to explain).

Grief is part of all this and I guess that is part of why I feel this so deeply when people "boast" about their brilliant kids. I grieve that my family has suffered in this way. I am sad that what seems easy to some, is a battle for us. On a bad day it's tough to keep looking upwards, to trust that our God loves us and our kids as much as he says he does. To know that he goes before us, and that our situation is known to him. 

Hidden reasons

The older I get, the more I realise how much what you see is different to what is really going on. And I'm quite convicted, because so often I judge others by what I see, without knowing the bigger story.

This is tricky to write about because I have a big elephant in the room that I want to write about as an example of this, but I really shouldn't write about it because it will invade that person's privacy. So let's go with some common fictional situations:

• a toddler who loses it in the grocery store
• a young adult who is sullen and rude
• a friend who can't seem to meet the goals she's set herself
• the quiet man in the corner of the room
• the colleague whose capacity to get stuff done is way less than yours
• the lady who appears antisocial

Oh, myriad examples. You know what I'm talking about. Behaviour that seems odd, or even unreasonable, that you don't understand and that is easy to judge.

What I sometimes (often?) forget is to stop and think is:

What's going on behind the scenes that I can't see?

There are many legitimate reasons for the above behaviours. From tiredness, poor organisation skills, or personal preferences; to the much more serious: mental health problems, traumatic life experiences, or serious physical illness.

The kicker is that most of the time we don't know why. Unless we know their backstory we don't know why that person is behaving like they are.

I've been on the receiving end of overt judgement from others, especially in relation to my children and our parenting decisions. That's hard. It's actually harsh. Sometimes it's possible to explain why such and such a thing is happening, but even then, it is usually very difficult for someone else to imagine walking in my shoes.

And I really shouldn't judge others for their poor judgement of me. I might not be guilty of saying my judgement out loud, but to my shame much judgement goes on in my head.

So back to my elephant. There are things about the way our family operates that I can't share with many people, and even the people I do share some things with have trouble fully understanding. You can speculate if you wish, or you can just accept that we are very deliberate about what we do. We make choices looking at the full hand of cards that only we can see. And sometimes those choices seem odd.

People look at missionaries and (sometimes) think "aren't they brave?" But they don't see the non-public times. The sheer exhaustion after an international move, or even the daily fatigue from operating in another language and culture. The self-doubt as we question our decisions. The fear as we wonder what the future holds.

Parenting as a cross-cultural worker is very challenging. We have no extended family to help us—though I know that many in our home countries are in that situation also. We're negotiating our way through situations that our parents never had to (and I'm not talking about screen-time here). We're trying to guess what the best decision is, when even small changes can impact our work, or even our ability to remain in the country we serve in. And we have few peers who are like us. 

It's a vulnerable situation, parenting in this way. Lots more people are watching us, more than would be if we'd never left the place we grew up in.

Please don't think that I'm in a bad way right now. I'm writing from a fairly strong position at present (though there are people I do avoid because of their capacity for quick judgment and slow listening). I'm writing from the experience that comes of having lived cross-culturally for over 19 years now. But don't fall into the trap of thinking that all is hunky-dory because I share photos of my family's public successes. And I'll try not to assume the same of you.

Job list in our house

Oops, I only just saw a comment on my post in May about household jobs and negotiating with teens. My friend asked me to post our list of jobs. 

Of course, they would differ for every household. Each family runs slightly differently and different things cause more stress than others, plus different ages and differences in schedules change how you do things. For example, when the boys were younger, two of them took turns to vacuum under the table after dinner. This was mostly because I struggled with how messy that place got and with the feeling of crumbs under my feet drove me crazy. Plus each family is made up of people with different preferences and limitations. 

We also do things differently here than in Australia for various reasons, for example, rubbish sorting is more intense here and we wash more often than we might in Australia with a rotary clothesline because the hanging space is smaller.

Here's our list of the regular jobs done to keep our household running:

These are shared by Mum and Dad

Make breakfast (7 times a week)

Make lunch (7 times a week)

Make dinner (7 times a week)

Set table for breakfast (7 times a week)

Set table for dinner (7 times a week)

*Clear table after breakfast (7 times a week)

*Clear table after dinner (7 times a week)

Breakfast washup (weekends)

Dinner wash-up (7 times a week)

Put clean breakfast dishes away (7 times a week)

Put clean dinner dishes away (7 times a week)

Rubbish collection inside (incl. replace bags)

*Rubbish – take out (3-4 times/wk)

Toilets clean (once a week)

Vacuum whole house (once a week)

Clean bathroom basin and mirror (every 1—2 wks)

Cleaning shower and bath and shower room (periodically)

Grocery shopping (2-3 times a week)

Washing clothes (~5 times a week)

Washing towels (once a week)

Washing sheets (once a week)

Bringing washing in (~5 times a week)

*Folding washing (~5 times a week)

Refill heater with oil (winter)

Ironing (periodically)

Mending (periodically)

Boys’ jobs

Hanging up washing (~5 times a week)

Breakfast wash-up (5 times a week) NOTE: This has recently been renegotiated and been replaced with the jobs that are asterisked above.

From high school: wash own clothes

Jobs we all do 

Get ourselves up on time

Shower ourselves

Clean our teeth

Manage our personal items like bags, lunchboxes, medication

Take care of ourselves by eating and sleeping well

Strip our beds and remake them

Keep our rooms tidy

Take care of our “work” responsibilities, including homework and schoolwork.

During the summer holidays we've added the job of planning and making one meal a week.

Noteworthy weekend

Another weekend-roundup. There really were only two noteworthy events on the weekend.

Track and field
The first was the final athletics meet for the year (for us). It took us away from home from 6.40am to 8pm. A long day! I ended up riding with the team in the morning and driving some of the team/supporters/coaching staff home in a school van. It's a 52 kilometre round trip, it took more than 2½ hrs to drive that!

Our son ran three individual races 100m, 200m, and 400m. He recorded PR/PBs in two of those events, much to our delight. He also ran the 4x400m. It was a "freshman" (9th grade) team consisting of the same guys who won a medal last year at the middle school finals. Obviously they were competing against guys older and stronger than them, but their goal was to beat their time from last year and they did this and narrowly missed their goal of 3 min 50 sec. It will be interesting to see if they'll have a chance to do this again next year.


Mother's Day
The other noteworthy event was a Mother's Day morning tea in a fancy coffee shop with David and our two younger boys. This is the second year that I told them that's all I wanted. 

Motherhood is a long-distance event of constantly loving kids regardless of how they treat you. I can't really say much more without invading the privacy of my boys. I got my morning tea, and there was some fun, but there were some tense moments too.

I've included this incident (as veiled as my description of it is) because I know that I'm not the only one who has difficult teenagers, though we hesitate to tell one another. I also know that when we set up a day such as Mother's Day, there are often high expectations and frequently circumstances mean that we don't hit them and we're disappointed. If that is your situation, for whatever reason, I don't want to discourage you by giving you the impression I have the perfect family, because I don't. My kids aren't perfect and neither are David or I. We don't love one another perfectly either. 

This is probably a whole post on its own, but I've been challenged recently by the Holy Spirit about loving the difficult people who are in my life: my own teenagers who I can't choose to avoid. I even thanked God on Sunday morning (before we even got out of bed) that because I have these kids, I have this opportunity to grow as a result.

One more thing that I can tell you about was that I did have the opportunity to talk with my own mum (and dad) for an hour via a video call in the afternoon, which was wonderful. So thankful for today's technology!

Confessions of a recovering conscientious student

I was a very conscientious student. "Conscientious" was one of the frequently repeated words on my report cards. 

David and I are a good couple, but our similarities
in the area of study-habits makes us less than sympathetic
to our not so studious boys!

I'm pretty sure my parents didn't know how lucky they were because I was also the eldest child (but I won't say anything about my sisters...). I'm a pretty typical eldest child: destined to want to fix things, be responsible, self-motivated etc. Though my oldest boy has played havoc with this birth-order theory!

To make it even more challenging for our family, David has the exact same characteristics. We hate seeing our boys leaving things to the last minute, not studying for tests, etc.

These last few days have been "culminating events" for high schoolers. That means they're on exam timetable and assessment has been scheduled. 

But not all are exams. I heard that the Economics class is going to a local Indian restaurant run by former CAJ parents with the goal of quizzing them about starting up a business in Japan. They'll finish their time there by enjoying lunch. I'm thinking the stats students (of whom one is my son), who have an exam at the same time, will be feeling a little ripped off!

But back to me being a recovering conscientious student. It served me well at that time, but it isn't a helpful characteristic when you're a parent it seems. Especially when you have kids who aren't that way. I've tried to be my kids "conscience" and it hasn't generally worked. It's just not something that's easy to turn off, though!

I'm trying, now, though. Especially for our eldest. I'm well aware that he's most likely not going to be in our house or even in the same country as us for tertiary studies, so he'll have to figure things out for himself. Hence, I'm trying really hard to hold my tongue these days.

Gagging on a day

I blogged the following post in 2010 when our boys were 11, 8, and 5. Friends who have little ones I want to encourage you: it isn't like this very often any more, but it used to be, and we survived!

"The mothers agree that indeed the years do fly. It's the days that don't. The hours, the minutes of a single day sometimes just stop. And a mother finds herself standing in the middle of a room wondering. Wondering. Years fly. Of course they do. But a mother can gag on a day." Jain Sherrard  

I really like it and it describes today - I gagged on today and in fact, many of our recent weekends. 

I could describe the awful behaviour that we've been suffering, but I won't spoil your day. I'm just praying that our boys will move through whatever stage it is that is making them so poor of hearing, so rude of speech, so short of patience and so full of complaints, that it makes them extra difficult to live with at the moment.

It is a pity, really. Today was a gorgeous autumn day and we even took the time to go on a picnic (and it took time—driving around Tokyo on a Sunday is a pain). Unfortunately we didn't really enjoy the outing, mostly because parenting is just painful at present. 

And that takes me back to the quote above. I couldn't help but long for these painful formative years to be over, to long for days when we can take a picnic and enjoy being together instead of struggling in random directions and in the meantime hurting each other. It is, of course, a longing for what cannot be until heaven, but that doesn't mean I don't still long.

Originally post here: http://mmuser.blogspot.jp/2010/11/gagging-on-day.html