Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts

12 May, 2023

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).

24 February, 2023

Telling stories and being heard

I've had more time to write this week than I've had for some time. It's been lovely. One of the things I've been writing is my regular column about writing for the upcoming Japan Harvest magazine. But the topic is convicting: stories. I'm passionate about telling true stories, but, like many people who write non-fiction, I often fail to use them. Stories often aren't as direct and take up more space. It also takes attention to notice some stories. Others, like my hair-braiding story, told here just are begging to be shared.

So, I feel compelled to write a blog post this afternoon, but am struggling to find a story to share with you, because as an editor so much of the time I'm working with other people's stories and not having experiences that can be told...but it's good to struggle sometimes. Here are some stories from the last couple of weeks that I hope you find encouraging:

Talent Show

On Tuesday evening we went to the school's Senior Talent Show. This has been a tradition for many years, but of course this tradition has been interrupted in the last couple of years. It's a fundraiser put on by the senior class in preparation for their overseas ministry trip in March. It is usually a mixture of fun and serious acts, but there are also a reasonable number of acts that just make the parents and teachers feel old because they are based around current pop culture that we're not familiar with. 

I did enjoy most of the evening, but it did go on a little too long (2 hr 40 min). Or perhaps I'm just getting old and unused to going out in the evening? I have to admit to still feeling a little exhausted by large groups of people.

It was fun to have one extra senior staying at our house that evening because he lives far away, and to chat with our son and his friend the next morning . . . but they're tired. I keep reminding myself that I was the same way at the same age and that it's just for a limited time. This will be all over in less than four months!

The importance of people-focus

Twice in the last few days I've had unexpected conversations with team members. Members of teams I manage. The teams I work with are quite task-focused—we're teams with specific outcome objectives: publishing a magazine and social media posts (for the purpose of mobilising for mission in Japan). So, I'm not sure I do a great job at caring for the people in my teams because I spend a lot of my time taking care of many tasks with deadlines. I often measure how I'm going in my job with how many tasks I've been able to tick off my list. Because both teams work remotely, I often go weeks without talking to any team members directly. We communicate a lot via text, email, and other online tools. 

So, spontaneous opportunities this week to connect (via video calls) with two team members who are struggling in different ways was unusual, but also good. 

I also led an online prayer meeting with about half the magazine team and it was good to not just pray for magazine matters, but to pray for one another and the things that are on our hearts and minds also. I felt heard and I hope they felt heard too.

Being heard

Last week I had another online prayer meeting with some expat mums in (or with a recent connection to) Japan who have kids with special needs—various needs, various ages. I'm new to their group, but I already had met most of the mums in other contexts. I'm starting to feel like these are "my people", and I find myself telling them things that few other people know. 

Recently I've found that what we've dealt with as parents over the last few years in terms of mental health and neurodiversity has meant I've found it harder to connect closely with many people. There is an experiential gap, one that's hard to define. People who don't have an experience with such parenting challenges can find it hard to understand, or simply don't want to, and I feel constrained in what I feel I can share with them. I wrote a bit about this with a great deal of emotion, back in October. There is great power in feeling like you're understood, and that people want to hear about what you're deeply struggling with. I'm so thankful I was "found" by one of these ladies last year and welcomed into their midst.

It's hard to literally see hills from our location
in Tokyo (Mt Fuji is visible from certain 
points, but not our house). This is a view
of mountains from a wrestling venue back
in December, a place I'll be returning to
next month for a Track and Field meet.

I lift my eyes to the hills

At the magazine prayer meeting I'd decided to help us focus by listening to a song based on Psalm 121, which starts, "I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth"

Most of the team, it turns out, are labouring under some heavy burdens, so this was indeed God going before and leading me to use this psalm and song in our time together. Maybe this song will help you as you struggle with something today too: Psalm 121 (I Lift My Eyes) Lyric Video • Kristyn Getty • Jordan Kauflin • Matt Merker