Glory that far outweighs them all

Things are hard at the moment. They often are. I can feel the strain. I feel exhausted, depleted, unmotivated, heavy, and wanting to curl up and have all expectations leave me alone. I'm forcing myself to do even simple things and having to take regular breaks in between. I don't think I used to be like this! I think this is what living in daily trauma looks like, a nervous system that never gets to recover fully. When I'm at home or with the kids, I have a tight chest. I feel on edge and agitated. What will happen next? Who will explode, when, and for how long? I've been physically battered recently. It’s normal, but I feel it more right now. 

Two of my children are now displaying a lot of aggression and violence. One child is always more than the other, but the other is getting up there. They have started to get angry at the same time. It’s unsafe!!!! I've said it many times. It’a traumatic! This can't carry on! HOW do we teach them that this is beyond inappropriate? HOW?! I should have called the police the other day. Four of us were locked in a room while the other raged on outside. It was us or the house! Broke my bedroom door badly, and the house looked ransacked after. 

It takes hours to recover enough for me to properly function after an ‘episode’, and ‘properly function’ means something completely different now than it used to. Survive mostly. I don't ever fully recover as we bounce from one crisis to the next. I don't know how to keep living like this! 

I haven't given up hope that God is with me. There is no doubt in my mind. I was reminded yesterday that God is not indifferent to my suffering and deeply cares. Jesus, a Man of Sorrows, the Suffering Servant, the Great High Priest who can identify with our suffering sees me. Nicky Gumble writes, “In the life of Jesus, suffering and glory are inextricably linked. The moment he [Jesus] comes down from the mountain [from being transfigured] he explains to his disciples that ‘the Son of Man must suffer much and be rejected’ (v.12). Jesus’ ‘glory’ was of a different kind to that which the world expects, then and now.”

I find peace knowing that Jesus went through tremendous pain and suffering and doesn't expect us to go through what He didn’t. Different circumstances, but the feelings are often similar as we experience physical pain, rejection, accusations, opposition, judgement etc. I will choose to cling onto the One who fully understands and mercifully walks by my side in the depths. 

“For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.” 2 Corinthians‬ ‭4‬:‭17‬ ‭

They don't seem light or momentary, that's the honest truth. It almost seems insulting that the Apsotle Paul would suggest that, but Paul is drawing our attention to a comparison. Our troubles are light in comparison to the glory that awaits us if we keep persevering. It’s something we can only imagine. 

I needed to remember that today. I already feel a little more peaceful and can breathe deeper. I pray you can too. 

Even though I walk through the valley.

Psalm 23 is a well-known scripture that offers comforting words, reminding believers of God's loving guidance during difficult times.

I've been a Christian for most of my life. I grew up in a Christian family and felt God reveal Himself to me from an early age. I have always felt His loving, tender hand in my life. What a gift that is! Of course, I went through ‘stuff,’ and it wasn't always picture perfect, but I never knew what the Psalmist, David, meant when he said; though I walk through the darkest valley, I will fear no evil for you are with me, your rod and staff they comfort me.

In the last few years, I feel I have had a glimpse into the valley, the dark, cold, frightening gorge. I have felt oppressive darkness like I never have before, and I have heard the roar of the enemy. It has been deep, overwhelming, and agonizing. The trauma of household chaos, violence, aggression, and explosions at any given moment has been part of my valley. I've ended up in the fetal position and weeping many times, asking God why He isn't calming the storm and what I am doing wrong. The consistency of being on-call to manage my family’s emotions and behaviour. Not seeing positive outcomes from the endless strategies I have tried. Seeking help from professionals, but with little success. Despairing at the destruction of property and hurt children because of the violence. Wondering how a family that is committed to following the Lord could be so disorderly and rude. Feeling the fear and anxiety of not knowing what will happen next.

BUT then, there is the comfort of his rod and staff. That’s, I'd say, as acute as the valley. Jesus said in the Sermon on the Mount, "Blessed are those who mourn, for they will be comforted” (Matthew 5:4). I recently read in a devotion by Nicky Gumble, quoting Joyce Meyers, “It’s almost worth having a problem to be able to experience [God’s comfort].” Whether I'd agree with that statement in the moment of great distress, maybe not, but there are no words to describe the beauty of God's comfort. I have felt it in the way of an unexpected moment to breathe, a friend texting out of the blue with encouragement, the Holy Spirit speaking into my soul with a verse or a word of knowledge, a wave of peace when crying out to God, and the practical help from our community. It's the little moments that bring relief, when I am reminded that God hasn't left the picture, that He does care, and that He is working all things out for good. That is when I feel the sense of His rod and staff; a constant beacon of hope in the dark ravine.

Would I change my circumstances if I could? Probably, but trusting God's sovereignty helps me see that hardships, like Joseph's, prepare us for what lies ahead and teach us valuable lessons.

Psalm 23

The Lord is my shepherd; I lack nothing.
2     He makes me lie down in green pastures,
He leads me beside quiet waters,
3     he refreshes my soul.
He guides me along the right paths
    for his name’s sake.
4 Even though I walk
    through the darkest valley,[a]
I will fear no evil,
    for you are with me;
your rod and your staff,
    they comfort me.

5 You prepare a table before me
    in the presence of my enemies.
You anoint my head with oil;
    my cup overflows.
6 Surely your goodness and love will follow me
    all the days of my life,
and I will dwell in the house of the Lord
    forever.

When Chaos Reigns

It can sound like a hurricane hit; crashing, things falling/being thrown, screaming, shouting, shrieking! It can look like a hurricane tore through the house; navigating the jungle of toys out, random objects on the floor, cupboards open, shoes and coats thrown, food on the counters and floors. This may sound like your house, or maybe you're wondering what kind of parent doesn't control this mayhem. If it sounds like your house, we can relate. It is more extreme for us than for the average home with kids; executive functioning skills are still very much in their infancy. If you're wondering what kind of parent can't bring some control, I don't blame you! I wonder that myself. Don't get me wrong, it isn't always like this, but a good chunk of the time, it is. It isn't for lack of trying, I assure you! It isn't even that the kids aren't capable; they are, but in the hustle and bustle, when emotions are running high, when everyone uses home as a place to let it all out, this is what can happen. Perhaps someone is having a severe meltdown, and the others have given up on getting attention from mom and dad, so they've made their own food or decided to engage in a messy activity that passes the time. Then there is the mental exhaustion of the parents. I cannot overstress the emotional toll of dealing with these meltdowns. I could crawl up in a ball and hide in a hole; it takes so much out of me - but that's out of the question. You have to pull yourself together and keep going. But am I up for bringing order to the disarray? No! So chaos often reigns. 

This isn't a pleasant living environment for anyone. Though we strive to make things better and pray they will get easier, we find ourselves in this hurricane. Where is God in the chaos? I have given this a lot of thought. I know He is there! I don't question that, but when the Psalms declare He is a very present help in times of trouble (Ps 46:1), how does this look in the insanity?

I often find that worship songs play through my mind amid the chaos. It is subconscious at first, and then I take note and register the words playing through my head. They are usually something I can hold onto in that moment or day. 

Our community is an excellent source of support that embodies God’s care for His people. “He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.” 2 Corinthians 1:4. People reach out when I most need it, or offer practical help. 

I have noticed over time that God often takes me out of a situation for a bit as a breather. The odd unexpected break when someone can take the kids, when the kids quietly get into a nice game together, and I can rest on the couch, my husband takes over, and I can lock myself in my room, when we can meet with friends, and the kids happily play. The scheduled break from going to work is a welcome distraction. I used to feel guilty about taking regular breaks, but now I realize they are a God-given lifeline. 

Helpers have blessed me, I believe, that God sent my way to help practically, with the occasional meal, assistance with cleaning, and laundry. I also thank God we live in an age where we can have our groceries delivered. 

God doesn't promise to take us out of the chaos, but he does promise to be with us. Sometimes we feel it, sometimes we don't. But He is there, providing moments of relief, help, and strength. When chaos appears to reign, we can take comfort in the fact that He is our haven. 

“The Lord is a refuge for the oppressed, a stronghold in times of trouble. Those who know your name trust in you, for you, Lord, have never forsaken those who seek you.”

‭‭Psalms‬ ‭9‬:‭9‬-‭10‬ ‭NIV‬‬

Co-Regulator

Have you ever had to tell yourself to put one foot in front of the other? I don’t mean metaphorically, but literally. I have and still do. ‘Keep moving forward,’ I tell myself. I find myself counting ‘1, 2, 3’ repeatedly in stressful moments. 

For me, it's often caused by never knowing when my children will have a meltdown and I will need to be their ‘co-regulator’ as the professionals say, or their crisis manager. These meltdowns can be severe and not something I can handle alone, but I do. This has brought me into a perpetual state of anxiety. Never knowing what a trigger will be and never knowing how severe or prolonged the episode will last is in itself anxiety-inducing, and then add on other stressors in life. 

What is a ‘co-regulator’ anyway? From my understanding, the idea is that one person can help another regulate their emotions (calm down from a heightened state of negative emotions). The Child-Mind Institute says:

“There is science behind co-regulation. Our own stress can make another person feel stressed; our calm can make another person feel calm. Successful co-regulation between a responsible adult and a child involves helping the child calm down on their own — which is why the first step to co-regulation requires you to deal with your own stress in a healthy way.”

So, as parents or those responsible for children, we are meant to invite the children into our own calm, which, of course, requires staying calm in heightened moments. Naturally, I would say I’m good at that. In my previous job, which involved caring for vulnerable people, I remained relaxed even in high-pressure situations. I have been described as being ‘as cool as a cucumber’. I have an odd way of being calm during a big crisis, but not over something more trivial, like whether someone is having a good time at a party I am hosting.

After years of dealing with many, many, many meltdowns from my children with special needs, I feel my calm is breaking, and I have a greater sense of anxiety and am quicker to react. I certainly have to put more effort into staying calm. There are many times when I don’t manage to remain even-tempered. After being hit, hurt and insults hurled at me or my family members, I am not quite so able to stay in my ‘calm demeanour’. I get elevated. Of course, that doesn’t help the situation or the person I am supposedly ‘co-regulating’.

So, how can I allow the Holy Spirit to be my ‘co-regulator’ in the intensity of the day, in or between the stressful times? I don't mean when there is time for sitting, praying or devotionals. I mean, in the moment when anxiety is building, things are happening out of my control, and I need steadying. I’m not an expert in any of this, nor have I perfected it. I struggle in this area, and I won’t pretend I don’t, but here are some things I do to try to allow the Holy Spirit to bring me into His calm.

•  A Christian professional recommended I have a spiky sensory cylinder and, while squeezing it, repeat a Bible verse. I often have this cylinder in my pocket and repeat John 14:27, “Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.” The spikes of the cylinder immediately remind me of the verse.
• Deep breathing and ‘box breathing’, while praying quickly, ‘help me’ prayers, allow me to call on and remember the only One who can bring peace.
• Chanting or repeating ‘Jesus is with me’ conveys the truth to my soul, allowing me to move forward and push through.
• Thanking God that He is capable, that He is big enough, and that He can handle the situation even though I can’t reminds me that it is not me who can fix the problem, but God.
• Letting the emotion out and pouring out my sorrow and lament to God. This releases emotions and puts them where they belong: at the foot of Jesus. (I think it is essential to feel the feelings; they are, after all, God given.)
• Meditating on a verse, and reading it over and over or calling to mind scripture I have memorized.
• I have recently learned of a couple of Christian meditation Apps that provide a quick devotion, verse, calming music, etc. Two I have come to know are 'Abide' and 'Soultime'.
• Play worship music - this has helped to centre me and bring peace.
• Go to a quiet room (often the bathroom), even for a few seconds, to cry out to God. Another professional recommended putting a note in my bathroom that says 'Gas Station' to remind myself that I am filling up on 'gas' when I'm running on empty.

NOTE: It is essential to involve medical and mental health professionals when needed. God uses many avenues and people. Sometimes chemical imbalances occur, and that is nothing to be ashamed of. Seeking professional help is a sign of strength and a step towards healing.

I am grateful we are not alone. Jesus said the Holy Spirit was sent as our helper. What would I do if I couldn’t call on Him? I don’t want to know! I hope and pray that I can teach my kids, even by modelling it, to call on the Holy Spirit to be their ultimate ‘co-regulator’.

The Extraordinary Road

 

I, like most people, like to fit in with the crowd. I don't like to stand out or have the attention and focus on me. I want to be ordinary, a regular Joe (or Jane). Partially, it is my personality, as an introvert, I get tired when I've had a lot of people interaction, so fitting in minimizes the need to explain things or have the focus on me. Partially, it is a selfish desire for approval; it is more comfortable. As a Christian, I understand the call of Jesus is higher than living in my bubble for a quiet life. Jesus asks us to pick up our cross and follow Him, stepping out of our comfort zone for His Kingdom. This means being called to be different and responding to others' questions about why we are.

He also sometimes puts us in circumstances that are far from ordinary, and this is where my husband and I have found ourselves the past few years: travelling on an extraordinary road with children with multiple extra (neurodivergent) needs. Life looks different for us, it just does. I wrestled with this for a long time. Why couldn't we do what other families were doing? Why couldn't our children handle things that seemed easy for others? What were we doing wrong? So we just pushed in, under enormous stress, trying to do what other families do. But what was going on? Why were there so many meltdowns and opposition? Why was even getting out of the house a living nightmare?

The multiple, extreme, violent meltdowns were what finally clued me in. Maybe it wasn't us as parents, perhaps something else was going on? It was a long journey where God graciously started revealing our kids' unique needs. It was devastating and validating simultaneously.

It was a journey of grief. We were grieving the life we expected and the challenges our children would face. We went through all the grief stages (and still go back and forth at times) and then, for the most part, came to acceptance. Even though life is exceptionally hard a lot of the time and we honestly wish it wasn't, we thank God for diversity and the ability to look at life with greater perspective, understanding, empathy, and appreciation for the small things.

Our road is extraordinary. We don't present the way many families do. Often, it feels like we are a whirlwind, a ball of chaos, a torrential rain. It is incredibly stressful and turbulent, I don't enjoy that, but there is great beauty in every victory, in each precious child who possesses the very image of God, who professes Jesus as their Saviour and can honestly say He can help them do hard things.

The road is rough, rocky, windy, and uncomfortable. There is no pretending that it is easy. It does, however, at times, offer excellent vantage points of scenery you wouldn't see anywhere else. It’s a track that builds resilience and character like no other. God knows what He is doing. He doesn't make junk or mistakes. He has good plans for all His children.

We will keep navigating this crazy road with the grace of God and those He has put around us. Never have I known my need of God more! We will endeavour to be real and allow the discomfort of being different to be a strength. It is God who lights our way. I truly believe God will use our children and their challenges to help others and be a testimony of God’s ability to create diamonds in the rough.

This blog is my narrative of our travels on this unique voyage. I can't give much advice about how to help struggling children, but I can provide my understanding and empathy as a parent to another on this extraordinary road.

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” – Romans 8:28

 

 

Stand Firm in the Raging Storm

The last couple of years have been incredibly challenging for our family. It has felt insurmountable. Too much. Never-ending. Completely overwhelming. 

Several of our children have various neurodiverse disabilities. As a result, we have fought more battles than I ever thought possible, leaving me and my husband physically, mentally, and spiritually worn to the ground. I never thought life would look like this. It has been extreme. Extreme behaviours, extreme dysregulation, extreme violence, and extreme struggles with executive functioning skills. I have been feeling trauma that I have never known before. But in the midst of this, I've also experienced moments of grace and strength that could only come from God. Of course, we love our kids and will continue to fight for them. We know our path is extraordinary. And God has allowed it for reasons, I’m sure we don’t fully understand yet.

Recently, I have been reflecting on the life of the apostle Paul, who writes in 2 Corinthians 1:8-9a

“We do not want you to be uninformed, brothers and sisters, about the troubles we experienced in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired of life itself. Indeed, we felt we had received the sentence of death.”

This verse struck me because the situation we are in has felt so high-pressure and far beyond my ability to cope. I can relate. Paul even despairs of life itself! These are not insignificant troubles that they are facing! It is fierce and leads them to a place of hopelessness in earthly life.

The end of verse 9 tells us Paul’s perspective on why they had to go through this:

“But this happened that we might not rely on ourselves but on God, who raises the dead.”

2 Corinthians 4:7-9 – “But we have this treasure in jars of clay to show that this all-surpassing power is from God and not us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.”

Paul's words remind us that God brings us to humility in our weakness, often through difficulty. But in these moments, we realize our need for Him, and His strength is revealed. It's a transformative process that can inspire hope and resilience, showing us that even in our darkest moments, there is a light of faith that can guide us through.

When we realize how desperately we need Him, how do we rely on Him and allow His strength to be manifested in and through us? 

God has been speaking into my heart about staying rooted in Him and ‘standing firm’. If we do this, even in the raging storm, we aren't thrown and tossed about. 

1 Corinthians 15:58:

Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labour is not in vain.

1 Corinthians 16:13-14:

“Be on your guard; stand firm in the faith; be courageous; be strong. Do everything in love.”

What does it mean to stand firm? To stand firm in our faith means to be steadfast, unwavering, and immovable in our commitment to Christ, no matter the situation. With God's help, we resist temptations, false teachings, and the enemy's attacks. It means staying rooted in God’s Word, persevering in prayer, and allowing ourselves to grow in Spiritual maturity. We rely on God's truth and not on our feelings, even in (or especially in) the face of challenges and opposition.

We need help from one another to stand firm: In trial, it can become challenging to stay focused on God and His Word when there is so much distraction. We need our fellow brothers and sisters to walk alongside us and encourage us. 

Hebrews 10 24-25:

“And let us consider how we may spur one another on toward love and good deeds, not giving up meeting together, as some are in the habit of doing, but encouraging one another – and all the more as you see the Day approaching.”

Galatians 6:2

“Carry each other’s burdens, and in this way you will fulfil the law of Christ.”

I encourage you to hold onto Jesus and allow Him to work good through whatever situation you are facing. Pray, read the Bible - small chunks a day, and thank God for His goodness.  Life can be complicated; it can hurt, and it's okay to feel and express that. But trust God with the outcome; He doesn’t waste our sufferings. One day, we will look back and see the beauty God brought from ashes. 

Reach out to others – the ones you trust. Perhaps a mental health professional.  It can be terrifying to be vulnerable with others, so ask God to tell you who to reach out to. Then, take a step of faith and allow them to support you. We weren’t meant to travel this journey of life alone. 

1 Corinthians 12:26 - 'If one part [of the body of Christ] suffers, every part suffers with it; if one part is honoured, every part rejoices with it. '

Romans 12:15 - "Rejoice with those who rejoice; mourn with those who mourn."

If Only People Knew

 If only people knew the trauma of having a child with autism who reacts with violence and aggression multiple times a day. The fear and anxiety it creates. The fear of the siblings getting seriously hurt, the fear that this beautiful child, whom you brought into this world, will not be able to grow out of it. What would the consequences be?

“I don't see it,” others say. " She doesn't seem autistic to me.” If only they knew what it is like to be their child’s ‘safe’ person, and behind closed doors, all masks are down, and the gloves are off. It is an unseen battle that scars the soul.

“Have you tried this?” " Have you tried that?” “I would do this,”” I would do that,” "I did this with her today and it worked, you should try it", and the clincher, “You need to discipline your children more.” The wounds to these words go deep because YES, we have tried, tried, and tried!!!

The judgment—the public meltdowns, the screaming in the neighbourhood, the neighbourhood kids asking why their friend is hanging out their window, screaming that she is locked in, the arguments, yelling, and screaming that happen within earshot of anyone.

The physical pain - being hit, punched, kicked, bitten, scratched, things thrown at you. Worse still, pulling muscles trying to restrain or move them into a room for safety, which becomes increasingly difficult/impossible.

Verbal abuse- they might be young, but somewhere they learnt some bad words and hurtful sentences. Yes, you're the parent and shouldn't be intimidated, but the threats and accusations wear you down.

The defiance—flat-out resistance to everything—the emotional energy it takes to win the simple battles in life, do daily tasks, and do what it seems others take for granted.

The distress- the feeling of being overwhelmed, failure, hopelessness, anxiety (oh the anxiety), pain of watching your child struggle and not knowing how to help and your other children exposed to behaviour, abuse, and words they should never be exposed to. Watching your child have severe separation anxiety from you and feeling the guilt of wanting to bolt at any given opportunity.

The confusing advice from the professionals is that one says this, one says that, one seems to ignore the sin issue, and one ignores the extra needs.

The lack of support—you can apply, but you’re on the longest waiting list in the world and have no idea what support will look like. What resources are available anyway? It’s a jungle to navigate. I didn't expect it. Even going to extremes to find support and help, ie, a two-week traumatic hospital admission and coming out with little.

The relational strain—Navigating this with a partner is much better than not, but the reality is that you are both under great strain, which causes some friction and damage.

The expense - money for therapists, quick food (because even cooking can be difficult, especially when meltdowns and arguments happen), items for quick convenience, drywall/paint/ doors for damaged things, locks on cupboards to secure knives, sensory toys/ equipment, prescriptions, etc. Thank goodness for a government that gives a tax credit.

The exhaustion - being woken during the night or in the morning, sometimes by being screamed at and punched, the constant demand as the primary caregiver who is seen as the answer to and cause of all their problems, the emotional toil of breaking up fights, calming people down, managing everyone's emotions and your own, the physical strain of restraining, blocking and moving into a safe places, and keeping the house in reasonable shape in all the chaos.

The time—the appointments: doctors, therapists, OTs, and physiotherapists. I often joke that my life is one big appointment.

The others—you are concerned for your other children and how they will handle all the stress at home. They aren't angels either, and they can push buttons, but overall, you wonder how it will affect them in the long run. They mimic behaviour, too. Aggression gets attention, so they all take turns if the others are calm. I'm told that it is common.

The expectation—though we aren't guaranteed anything, we do expect (or hope) we will have a life that looks a certain way (especially as Christians), and when it doesn't, it feels like a failure in some way. It certainly needs time to grieve what you thought you had, but it looks very different.

The summer—‘Are you excited for the summer?’, ‘Do you have any nice plans?’ Actually, I am fearful that I am losing all my support and will have to manage it alone. Everything intensifies, and there is little break from it.

Keeping it together—it’s not pleasant having everyone know your business, and for the sake of your child, you don't want everyone to know. Keeping up appearances seems ridiculous, but it is also necessary for survival.

I will always declare and believe that God is good and keeps us afloat, but perhaps I don't express enough the trauma that having a child with extra needs can bring. I have struggled with depression, fear of being left alone with my children (and feeling ridiculous for it), and I have wondered if Jesus cares and why he is sleeping in the boat when the storm rages. I have felt angry and alone. I never doubt God is there, but maybe I am seeing it is ok to lament, grieve, and say ‘I’m not ok and this isn’t ok’, while fully believing that the joy of the Lord is my strength. It is an undercurrent that I know more than I ever have. I choose to believe there is a greater plan; God will use this and bring beauty from ashes.

To others going through this, I'm sorry if I ever judged you without understanding the daily battle. Now I get it. It's so painful. I am truly sorry! I can hear you say, ‘If only people knew. ' All I can say is that God sees you, and you are not alone.