Category Archives: Mental health

House Hunting

June 7, 2025Autism, Emotions, Marriage, Microcephaly, Parenting, Special Needs, Stress, That's LifeKirsten Jack

It was supposed to go well.

Kris had washed both cars, we were wearing our good clothes. I was holding my best handbag. And I had a personal application letter and supporting documents altogether in a plastic envelope. The kids were prepped – best behaviour and shoes off before walking in the house. We strategically chose to arrive in two cars, to minimise anxiety. And we arrived ten minutes early.

Ready for the house inspection. The most promising house floor plan we had seen since searching over a year prior. (Apart from the perfect impossible property… more another time). Ready to make a good impression, so our rent application would be accepted.

A great start!

And Summer had had a lovely morning. There was no carer, so Summer came into my room with clothes picked out and asking for a shower. Winning!

She enjoyed pancakes for breakfast and then played the keyboard in her happy place. She was calm and relaxed getting into the car. And we had a good car drive. She repeated phrases over and over 5-7 times. And Sarah and I were patient and allowed her to be.

It was easier knowing the other three kids were in the other car. Knowing they weren’t getting stressed out by Summer.

We walked to the house and all took our shoes off. It was a bit bumpy going in, everyone unsure where to go, but everyone soon took off to their places of interest.

It didn’t have a great feeling. But hey, you make it your own home once you move in. And any small issues could be worked around. It all looked like the photos so far.

We hit the stairs and that was new information. Steep wooden stairs with not a great hand rail. My anxiety increased. This was my biggest question mark, not having seen photos of the stairs. Were they safe for the girls who would be upstairs? The girls, who frequently have absent seizures. And was it fully enclosed at the top of the stairs? No and no.

The rest of upstairs was all great – nice living space and bedrooms and bathroom and kitchen for the carers to prepare meals for the girls. No laundry though, which we thought was there from the plan. Dang. That’s a big problem. The carer then has to come downstairs and leave the girls alone and come into the area of the house that belongs to the other three kids, to do the 2-3 loads of washing a day that happen with the girls. Oh dear. The three kids are sensitive to carers being in their space. Not feeling good.

While looking at the rest of the rooms, which seemed fine, I’m processing in the background our options. What if we put the other three kids upstairs instead? They could love it. But the point was for the girls to have their own kitchen and laundry for independence and separation. Aargh!! What to do?

We went outside and put our shoes on again and explored the back garden and shed. I voiced this idea aloud in front of everyone. This set off a chain reaction. The three other kids were aware that upstairs had three bedrooms. One large with walk-in-robe and direct access to the bathroom. One medium. And one extremely tiny. The discussion had emotions.

Summer was there listening. And silently being triggered.

We went back inside and the three kids rushed upstairs to re-look at it all. Summer wanted to go upstairs too. Kris and I steered her to the downstairs bedroom area, to give the three kids space. And to avoid the long, slow unsafe journey up the stairs again. We steered her away. But she was cross. And she started expressing it.

‘Shut up’. Then again and loudly. More words. Then turning around and giving the middle finger. We tried to calm her down. She walked back to the dining room and picked up a container on the table that belonged to the owner and threw the contents across the floor.

We hadn’t met the owner yet. The host had let everyone in. But the owner was late.

And at that moment the owner made her entrance. And met Summer in all her angry glory.

And met us apologising for and picking up the carnage. She was sympathetic – ‘it’s hard’.

Summer then went up the stairs. I followed her closely.

At the top of the stairs she pushed the gate harshly against the wall. The lock on it pressed hard into the wall and punched a hole in the plaster. Bits of plaster fell to the floor. She kept opening and banging the gate open and shut in frustration.

I called Josiah to help. He tried to calm her and stop her banging the gate. I was just below Summer, near the top of the stairs and nervous about the tense exchange in the position we were.

Kris came up. The three kids went down.

I told Kris.

Neither of us discussed it. There was no emotion. We just did what we had to do next.

He supported Summer. He waited. I took a photo of the wall and went downstairs and showed the host, then the owner and profusely apologised.

It was embarrassing. But I’m used to it.

We promised to arrange someone to fix the hole within the week.

We gave her our pre-prepared letter and documents, with acknowledgement that this might not be the place for us. She said it wouldn’t be ready until August anyway, as someone else was going to move in for the month of July.

She was very nice.

I had good rapport with her.

But the elephant in the room was big – her first impression. What can you do!

If our life was a movie, this would be one scene that had a perfect script. For an awkward family encounter. A disaster moment. Not what we had planned.

We went back to the cars. Kris took the lead and said he would take Summer to do shopping. The other four kids hopped in the car with me.

We drove in silence for some time.

Then I debriefed quietly with each one in turn. Kiara, then Josiah, then Micah, then Sarah.

The first three had come to the same conclusion as I.

The house wasn’t going to work for our family.

It wasn’t the realisation we were hoping for. We want to move now.

At home I also debriefed with Summer. She said ‘sorry mum’.

And Kris – we are on the same page. I’m so grateful we stuck to a peaceful response together. It could have been worse. Kris was concerned about bringing Summer in the first place. I thought she would be fine, as she had done well previously. And we had no carer anyway. There was no ‘I told you so’.

Next time I imagine Summer will stay home.

And hopefully next time will be the one!

My Current Reality of Seizure Watching

November 16, 2024Autism, Exhaustion, God, Joy, Microcephaly, Parenting, Peace, Special Needs, Spiritual, Stresshope, microcephaly, seizures, stress, traumaKirsten Jack

Two of my kids were born with microcephaly and lissencephaly — small brain and smooth brain. Prone to disability and prone to seizures. And the seizure thing — we’re living that right now.

I write from the outdoor couch, where I’ve positioned myself so I have a direct view of my daughter, who is sitting on the inside couch listening to a little girl sing Christmas songs on youTube. It’s a mixture of joy and safety. For Summer it’s the joy of music and the safety of the couch, in case she has a seizure. And for me it’s the joy of being outside closer to nature, with the safety of having a direct line of sight to my daughter Summer, in case of seizure.

So I’m on high alert.

These are the thoughts that have to be thought every day.

Because this year Summer has had over 60 seizures. And since Monday week ago, Summer has had 16 seizures, primarily during her sleep time. This resulted in two trips to the Emergency Department and overnight stays at hospital, plus multiple tongue bites and her subsequent refusal to eat food for about 6 days. Needless to say she lost quite a bit of weight and we started buying Sustagen for her, to be consumed with a straw.

It’s been a tough week for Summer. And it’s extra hard for her with her moderate intellectual disability and diagnosis with autism. Add to that her lack of sleep this last week, hunger and new meds affecting her moods and I’m amazed it wasn’t a recipe for disaster. Only one thing got broken this week — the brand new baby monitor camera which got flung on the floor. My other expensive equipment I quickly dismantled and hid in my wardrobe until Summer’s frustration had passed and my husband was able to assist.

Apart from that, she’s been amazingly patient and low key. Full credit to her — honestly amazing!

But it’s still been intense.

Summer’s younger sister and brother have seemed pretty ok with it all. But last Friday I could see it weighing on them. Flatness and tiredness and them at first wondering why they were tired. It’s easy to explain. We all acknowledge it’s been a tough few weeks and months.

Sarah and Micah the younger siblings have often been the first ones to alert us of seizures, when they were originally happening during the day. Especially if they’ve been watching TV with her. Sometimes if we can’t be with Summer, the positioning of the other kids in the same room is peace of mind, but we don’t want to burden them. We try to take the brunt of it. And also use carers.

Our older two kids and Oma shone through with love and support this week. Josiah saw us both wrecked on Sunday night and took it on himself to heat up a lasagna dish he had bought for himself and dished it up for the two youngest ones. And did the dishes and wiped the stove out of care, without being asked. And then he volunteered to do the sleepover to watch Summer. We were SO grateful. And Oma got the girls ready for bed, since we didn’t have a carer that night. She’s always willing to step in when needed, always going above and beyond.

Our eldest daughter Kiara, with Kaitlyn came over with a cooked meal, plus chocolates for me and Kris. And a crocheted bee that Kiara had made by hand for Summer. Bees are the theme for Summer right now, so she was beyond excited!!

And the carers have all been amazing — helping out every morning, afternoon and most evenings. And some doing sleepovers! Without them we wouldn’t be coping.

Kris and I are tag teaming intuitively, and also learning to discuss our expectations more in advance. This has been testing, but overall very good for us as a couple. Kris has reduced his work, to help support me and the family more. I’m very grateful.

And the biggest, but mostly invisible help, is our family and friends encouraging and praying for us!

This is truly a team effort!

It’s hard to know how to live life in seasons like this. I’ve had all these goals I was trying to consistently achieve before all this happened and I was doing well. But with this onslaught, I’ve had to let them go. (This is a recurring pattern in my life). All I can do is look after myself and look after the kids and my husband. And the best use of my energy is a posture of kindness. That posture looks after me and looks after everyone else. I’m grateful for that opportunity and learning. That’s a better achievement than my goals.

Summer was supposed to be at a respite house this weekend for two nights, but because of the seizures she is home. So her sister Sarah went there alone. But we got a message from the respite house this morning that Sarah bit her tongue, probably overnight. We suspect a seizure. Sarah has only had one seizure in May last year, and is on epilepsy meds, but we have been on alert in case more occur. The support worked also reported that Sarah was having odd balance issues and facial ticks (mini-seizures?) this morning, so we are picking her up early this afternoon.

So someone will sleep in Sarah’s room tonight and someone will sleep in Summer’s room, to monitor for seizures.

It seems unbelievable that this is occurring. A double whammy! We did want an extraordinary life. This wasn’t what we were thinking.

But what can you do?

I guess I laugh with incredulity at how crazy this moment is. And I pray.

Mostly though I rest in trust. Trust in who God is and his goodness in our life. That’s my most profound reality.

I’m still stressed though. But with peace and trust. How is that even possible? It’s a weird mix. And without God I don’t know how I would cope.

We are grateful for peoples’ kindness in this season. And I’m reminded how much others need my kindness too. I hope I always remember that.

I’ve got a break now. Leigh our carer, has taken Summer and Micah out for a trip to the lolly shop. And then he’ll pick Sarah up and bring her home. What shall I do now?

After I upload this article, I’ll probably lie down outside with my relaxing music on and do a puzzle.

I hope you have a nice day wherever you are. And I hope people are kind to you.

I don’t often write about this, but this morning for some reason I wanted to. Thanks for reading.

Perseverance

August 24, 2024Bible, Grateful, Inspiration, Joy, Mental health, SpiritualKirsten Jack

The Purpose and Joy in the Trials

My parents bought me a black and white picture of a gymnast on a beam, with the caption,

“Do not pray for an easy life. Pray to be a strong person.”

I didn’t like the picture. It had no colour, or joy to it. And I didn’t like feeling pulled in by the caption. I knew I would succumb one day and pray that prayer.

And I did.

Several years later, I decided to memorise the book of James, a practical book of wisdom in the New Testament, from the Bible. I was drawn to its strong and unapologetic stance on things like caring for the poor, faith in action and taming the tongue.

So I started memorising the first chapter and then was struck by verses 2–4:

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.” James 1:2–4

Wow that was a kapow!

And because it was at the start of the five chapters, when memorising and revising, it got the most practice. So it got locked solid in my brain.

And I dissected it bit by bit in my own time. Understanding the words, one at a time.

I thought — do I want to be mature and complete? Yes please. Do I want to lack nothing? Yes again.

So what do I need to achieve that?

According to the verse — I need perseverance. But not only perseverance, I need to persevere with perseverance, so it can finish its work.

But how do I get this perseverance?

Well, it says that having my faith tested develops perseverance.

So I need lots of instances of my faith being tested. And that means trials of many kinds. Not just one, not just a few, but many. And all different!

And this is the revelation I got at the time.

Consider it pure joy.

I got it.

Trials could be viewed differently. Instead of being just pain and suffering, discomfort or disappointment. I could view them with actual joy.

Because they were achieving for me what I wanted. And what couldn’t be achieved any other way.

How else do you get perseverance, without persisting through something difficult? How else do you prove your faith, without facing something hard that many might give up in the face of?

That verse has encouraged me over and over again in my life.

As a teenager I didn’t have that many trials. Sure I had friendship issues at school, but I was raised in a safe, loving and godly home.

But now that I’m 47 years old, I can most definitely say I have been through a huge amount of trials, not the least of which has been nearly 10 years of chronic fatigue, while raising five children, two with special needs.

I need all the encouragement I can get in this season of life. I long to have energy and feel normal again. I feel so burnt out from caring from my special needs daughters, even with the support of my husband and multiple carers for the girls.

But even in the midst of the prolonged nature of this trial and the disappointment that I face within this, I am reminded of this verse. Consider it pure joy.

And when I’m reminded of this perspective, I am invigorated with great hope in the midst of great challenge. I can have a strong sense of purpose.

Not an easy life. But an adventure. And one that is building me in all the ways that I need.

Child-Like Trust

August 15, 2024Anxiety, Emotions, Freedom, God, Inspiration, Joy, Laughing, Mental health, Parenting, Peace, Spiritualbreakthrough, mental health, peace in life, playfulness, trust in GodKirsten Jack

Adulting with Joy and Peace

Light and playful. It’s a vibe I like.

My kids do it well. My daughter Summer is 17 years old. She has a moderate intellectual disability, as well as being diagnosed with autism and epilepsy. Verbal communication is not her strong suit, but she loves to connect with people. She loves to have fun. And she loves to laugh.

She will sit with two adults having a conversation for long periods of time. And when they laugh she will laugh. With gusto. It’s hilarious. I don’t know whether she understands fully what the conversation is about, but she understands the laughter. And with that she joins in. And people love her for it.

My son Micah is 13 years old. He is often launching out with funny comments or questions, or playfully teasing my husband and I. I’m not always ready for it, but he is. He has a playful vibe of ease, that I know I need to lean into more. It’s good for me. It’s good for him.

Yesterday I was praying with two other women. And sharing how I was struggling with so much fatigue. Having been diagnosed with chronic fatigue, this is a recurrent theme and I’ve had all kinds of advice. But yesterday their encouragement was different — live more like a child — with joy, freedom and playfulness.

Then last night the theme continued. My Facebook livestream guest was interrupted by her young son near the end of the program, wanting to say goodnight. She shared how he had also come to her earlier, so determined and insistent for her attention. So much so that she got a revelation…

“That’s how it’s supposed to be with us and God… running to him, with all our want and insistence, just to be in his presence.”

I cherished that image when she brought it. That one-eyed wanting of his attention.

So I pondered all of this today…

Why is that we adults often don’t live with the joy and freedom of kids. At what point do we lose this and why?

I thought about our responsibilities and our subsequent seriousness. I wondered if we bear the weight of these and they burden us. Do we become fixated on what we must do — desperately trying not to drop the balls we are juggling in the air?

Perhaps also, we learn over and over again, through let down and disappointment, that other people can’t be fully trusted. And so we are tempted to be more self-reliant, trusting only ourselves.

Indeed, that let down is inevitable for all of us. People have different perspectives and expectations. And we can’t mind read or live to please others all the time. So disappointment, then self-protection eventuates.

And yet children haven’t learned any of this. They don’t carry this burden.

But what if the weight of adult responsibility is not meant to be entirely ours? What if we are not meant to put our trust in people?

What if we were created to put these weights on God?

Hmm that’s a thought…

But is that practical? How would that look?

What if we trusted God so implicitly as the good Father, that the weight of responsibility shifted. And we were just obedient children doing what needed to be done, but ultimately trusting God to provide, to direct, to protect, etc. A change of heart posture. Would that feel lighter?

And what if, instead of trusting people and being disappointed, or retreating into self-reliance, we put our trust in God. Living with the hope and faith, that he is our good Father, our provider and our shepherd. What would that heart posture do to our burden?

I sense many would baulk at this. Who puts their trust in the unknown? Who throws away reason to the wind?

But for those who know God, it is the most logical thing to do. The God who sees all, knows all, has ultimate wisdom, with unconditional love. There’s no smarter option. The God of the Universe who can be trusted, even if we don’t like what he says all the time. There’s freedom in surrender to him. Albeit that the process of surrender can be painful.

Surrender. The door to breakthrough.

Think about it.

So much anxiety we live with. It’s not meant to be. We weren’t made to carry that weight.

…

God help me be more childlike and trust in you. To not carry the burden of responsibility that is not mine to bear. I want to live with that lighter step, to enjoy the freedom of playfulness in the midst of adulting. I need your help to go through that door.

The Power of Non-Judgmental Thinking in Daily Living

August 7, 2024Bible, Emotions, Exhaustion, Freedom, God, Inspiration, Joy, Mental health, Peace, Spiritual, Stressdaily life, inner peace, Jesus, overcoming, relationshipsKirsten Jack

My dad was the first one who planted the seed. I remember when I was about 15 years old, being in the car with my brother while my dad was driving. A guy rudely cut my dad off and I had a moment of glee — this was the perfect justified moment to beep the horn. Dad had been offended and it was his time to let the guy know! I waited. My brother waited. We waited some more. And there was no beep. With great disappointment and indignation, we protested to my dad, “why didn’t you beep at that guy?”

I never forgot his answer — “you never know what that man’s morning was like — maybe he had an argument with his wife and is stressed, maybe he has cancer and is on his way to a medical appointment — I wouldn’t want to make his day any worse by beeping.”

OK. So we were silenced. What could we say in the face of that compassion and possible reality. And even if he was wrong, how could we actually know either way. Was he rude, was he not coping? We didn’t know. And that was my first lesson in judging. We don’t know all the facts.

In true parrot fashion, I re-enacted this lesson many years later with someone else in the car. We had passed a house with a horribly overgrown lawn and the person next to me was commenting how lazy the house owner was. I immediately looked for other compassionate scenarios, suggesting that perhaps the owner was disabled or sick and couldn’t mow the lawn, and/or was financially challenged and unable to afford to pay someone to do it. It felt good having this response.

So I started to practice this style of compassion more and more. I did not become an overnight convert. I still struggled with judgement. But in the process of trying, I began to discover important differences in the two types of responses.

I observed that judgmental thinking came with a sense of pride and superiority. This had a certain appeal, an enjoyable boost of ego, but in a dark festering way. And I observed that kind and generous thinking had real joy on the other side, leaving one feeling free and unburdened. I knew which one I preferred.

Years later, I was standing in front of my bathroom mirror. I felt exhausted. I was struggling with looking after five kids, two with special needs, one of whom had significant behavioural challenges. I couldn’t change my daughter’s disability, so I was desperately trying to create peace and rest in the places I could. I felt like I was doing everything I could — managing sleep, regular daytime rest, sunshine, good eating, etc. So I cried out to God, “What else can I do to reduce stress?” Straight away I heard the words in my heart, “Stop judging!”

I was taken aback. I considered myself to be a pretty non-judgmental person. I was practicing what I described above on a regular basis. That was now my default way of talking.

But was it my default way of thinking?

I realised that I still thought about the people in my world in ways that were judgmental. Had they offended me? Had they neglected me? My thoughts were all cased in judgment — they were insensitive, uncaring, not measuring up to my standards. I was judgemental!

I decided then and there to try to stop those thoughts. So when they came, as soon as I recognised them I would choose to end the trail. Think of something else. Just stop! It was not easy, but it was possible, as long as I remembered. And the more I practiced, the easier it got. And here’s the thing, I got more peace!

I reflected, there’s a lot of noise made from internal judgment. It’s busy and unhelpful. So it was good advice from God, to let it go.

And so yes I had more peace. But as with everything, there were more layers with this thing. You learn one lesson and you think you’ve learned it. Then you find there’s more to learn.

Fast forward to the present. And I find myself in a daily living situation, where I feel judged frequently. And by now judgement really grates on me, as I know how destructive it is. But there’s a trap. And the trap for me is to feel self-righteous. And then I got another revelation…

“With the measure you use, it will be measured to you”…

Those words from the Bible stuck in my brain. And it occurred to me that if I was feeling judged by this other person, then perhaps that was because I was judging them. Perhaps if I wasn’t judging, I would be free from feeling judged. Of course, my mindset can’t control another, but it can impact my inner suffering or peace.

I reflected on the words, with the measure you use it will be measured to you. I had always thought this referred to the end of time. The time when God judges the world. And then if you judged others harshly on earth, you get judged harshly by God.

But what if it was actually referring to the ‘here and now’. What if it referred to our inner suffering or peace. Perhaps if we judge others harshly, we perceive others as doing the same to us and we suffer for it. And perhaps if we don’t judge others, we don’t perceive others judging us. And so we don’t suffer. We have peace.

It was an interesting thought. And I have enjoyed it.

And I am still contemplating it.

At the end of the day, I always come back to the thought — God’s ways are brilliant. And he knows what he’s talking about!

Oh the peace that is available. And yet we do not often recognise it is so.

“Do not judge, or you too will be judged. For in the same way you judge others, you will be judged, and with the measure you use, it will be measured to you. “Why do you look at the speck of sawdust in your brother’s eye and pay no attention to the plank in your own eye? How can you say to your brother, ‘Let me take the speck out of your eye,’ when all the time there is a plank in your own eye? You hypocrite, first take the plank out of your own eye, and then you will see clearly to remove the speck from your brother’s eye.” Matthew 7:1–5, NIV

How A Second Phone Helped Me Overcome Screen Addiction

July 17, 2024Anxiety, Freedom, Inspiration, Mental health, Social Issueshow-to, mental health, personal story, screen time, self-improvementKirsten Jack

Photo by Vojtech Bruzek on Unsplash

I got an idea.

“Get a second phone.”

It sounded different from my normal thoughts. It was confident, but quiet. Immediate and with a full-stop. I thought it might be God speaking, so I gave it serious attention.

At first it seemed like a stupid idea — why pay money for another phone and monthly plan? Why complicate my life with a second number?

But I thought further…

I had a major problem. I was getting distracted by multiple apps, multiple times a day. Leading to dopamine overload, reduced creativity and reduced brain capacity.

And yet I wanted a rewarding life, with flourishing creativity and maximum brain capacity.

Should I just ditch my smart phone?

“Not possible!”

My lifestyle now required a smart phone. Unless I moved to a farm and lived off-grid, I couldn’t do without many of the apps on my phone. But they sucked me into their distraction vortex too often. And I didn’t have the willpower to control this. It controlled me.

So how could a second phone help with this problem?

I thought about it… If I had a second phone, it could be a simple one, just for calls and texts, without any other apps. A way to be contactable by those close to me, for emergencies or immediate communications. And free of the distraction of the apps on my other phone.

And then I could keep my smart phone as a tool, for specific tasks. But with a new mindset — that once I’ve used the tool, I put it away without looking at other apps at the same time.

This all dawned on me rather quickly and I was excited! I didn’t have to ditch my smart phone. I could keep all my apps. But a second phone could give me a better chance to live in control of when and how I used my smart phone.

So I decided to try it. I ordered the second phone. I ordered the SIM. I got it set up. And I STARTED!

…

So did it work?…

The PROS

The first thing I noticed was a profound change at bedtime and wake time. I was now empowered to put my smartphone outside of my bedroom, so that it couldn’t intrude on sleep time or the start of my day. I wasn’t able to do this previously, as we have two special needs daughters who have carers assisting them each morning. And it is essential for me to notice and respond quickly to carer texts.

But now I could put the second phone next to my bed for urgent carer messages. And leave the smartphone with all its distracting apps out of the bedroom.

This has meant more peace with how I finish and start my days. No more message or social media checking or news reading. Instead I’m just writing in my journal, reading, or just lying still and thinking. It feels good!

This has been the biggest change so far.

The other positive change has been the feeling of empowerment and control. Because the smart phone is no longer ‘urgent’, I have been able to view it as a tool rather than a friend. It has a purpose and when that purpose is complete, it goes back in its place.

This has also reduced anxiety for me, not needing to check it all the time. And this is giving me a lot of headspace back.

The CONS

On the down side, it is annoying having two phones. Sometimes I need to carry both around with me, eg when leaving the house, so I have GPS.

Sometimes it is confusing having message conversations on two different phones. The carers for my daughters, for example, message me during shifts on the second phone. But for non-urgent communications they message the smart phone, for me to respond to during my ‘non-urgent’ administrative time. And this can be confusing. I’m still working this out.

There is also a small financial cost to having the second phone. I paid $50 for the phone and also pay $10 a month for the SIM card. Personally I think the cost is well worth the gains that I am making. $2.50 per week for more empowered living!

UPS AND DOWNS

Several days after trialling the second phone, I became sick and ended up in bed for over a week, unable to think or function properly. I reverted to screens for distraction and entertainment during this time. It was a deliberate decision to do this, as I didn’t have the mental stamina while sick to achieve the new empowerment goals. It was annoying, but it was temporary.

Once better, I put the smart phone back out of the bedroom. And went back to where I started, using it as a tool only.

I initially used the smartphone for downtime in the evenings. I liked to hop on once a day to play Wordle & other games, plus check social media and the news. Given my chronic fatigue and the unpredictable challenges of two special needs girls, this was a coping mechanism, curling up with my phone for ‘down-time’. But by week three I had the headspace to lie down and listen to music instead. And then not long after that, I took the next step and ditched using the smartphone for downtime. This was super encouraging, as I couldn’t achieve this in the beginning, but could after three weeks. And this encourages me to think that I can achieve even better steps in the near future.

CONCLUSIONS — SEVEN REASONS THIS EXPERIMENT WORKED

After more than one month, I am super encouraged at how effective a second phone has been in reducing screen distraction and addiction. I have made sustained progress that was not possible previously. There are seven reasons why I believe this has been working…

1. REMOVAL of FEAR

Having a second phone for urgent messages, removes my need or excuse to check my smart phone regularly. My smart phone is no longer urgent — I can think of it differently, without anxiety and use it only as needed.

2. MINDSET CHANGE — TOOL not FRIEND

Going to all this effort to have a second phone motivates me to embrace the mindset that my smart phone is a tool, not a friend. So when I use it, it is for a clear purpose and then I put it away again. I am empowered to have this disciplined approach and I feel great for it.

3. ACCOUNTABILITY

Because I’ve told immediate family and carers of my strategy and given them my new phone number, which they are now making the effort to use, I feel obliged to stick with my goals, or I will look foolish in front of them. And I will have wasted their effort too. Likewise, by posting here online, I am further accountable to others, to stick with my goals.

4. FINANCIAL INVESTMENT

Because I’m paying a monthly subscription for a SIM card and because I paid for the second phone, even thought these costs were minimal, I don’t want to waste the money by failing. I am further motivated to succeed to make this investment count.

5. MOMENTUM

As I have been succeeding, I have made further steps that were not possible at the beginning, such as eliminating comfort scrolling in the evenings. This has given me more discretionary time to do other more healing or productive things. I’m on a roll and this will likely lead to more and more wins.

6. INCREASED AWARENESS

As my mind experiences longer times of being clearer, I am becoming more sensitive to the negative feeling of phone over-use. Too much use of the smart phone, even as a tool, causes me to feel ‘wired’, and ‘tight’ in my brain. I don’t like it. And because of this awareness, I’m choosing to use the smart phone even less often. The positive impact is snowballing!

7. READY FOR IT

I don’t think this idea would have worked if I wasn’t ready for it. Having tried other solutions previously and failed, I was ready to try something new. And I was willing to ‘pay for it’. I was keen to run with discipline. I just needed help to overcome my stumbling block — the feeling of urgency to check my phone all the time. And the second phone was the catalyst for this opportunity.

I fully acknowledge the solution of a second phone is not fool proof. It relies on my will and daily decision making, as to whether I succeed or fail. But it has made it a LOT easier for me to succeed.

I’m grateful for now experiencing a calmer mind and the new space for other activities. I hope that long-term there will be an exponential impact, in terms of improved mental health and creative/intellectual capacity.

I hope my story encourages you in your own screen time journey. And that some of my discoveries can help you find your own unique solution that will empower you to live your best life! Your mental and creative capacity are worth the investment!

Lastly, some of you may be wondering… why did I mention God at the start? Did he actually talk to me? Was this his idea? Those are relevant questions and I will definitely be talking about God in future articles…

The Screen Time Experiment: A Radical and Practical Solution

June 15, 2024Freedom, Inspiration, Mental health, Social Issuesaddiction, ideas, screentime, selfimprovement, solutionsKirsten Jack

Photo by Kenny Eliason on Unsplash

Part 1 — The Idea

Like many of us I have struggled with screen addiction. I’m 47 years old, mum to five kids (two with special needs). I struggle with chronic fatigue and spend most of my week at home. I have an iPhone 11, MacBook and TV. And over the years I have tried and failed numerous times to curb my impulse to be sucked in by attention grabbing apps!

I consider myself reasonably curbed, by today’s standards… I don’t play online games, except for Wordle and some of the other NY Times games. And I only watch 3–6 TV shows/movies a week. It could be a lot worse, but I’ve recognised how easily addicted I get to games and I’ve banned myself from ones like ‘Cooking Fever.’ When I used to play them, I would obsess and dive in deep and get really good at it in a short period of time. Then realise it was all I was thinking about, and decide to go cold turkey and delete. The same would happen with Netflix TV series — enjoyment leading to obsession that became too all consuming — again the solution was to delete!

Deleting was my strategy with many other apps too. I’d realise how much time I was wasting looking at my phone, so I’d start deleting whatever I considered was a non-essential app. But inevitably this strategy failed dismally. In the weeks following, I would find myself slowly bringing back the apps one by one, as I realised how inconvenient life was without them. First the ‘necessary’ ones, then the less necessary and then finally the rest of them, because everything had crept right back and I’d lost my will to fight for my mind.

That was the thing. I felt like I’d lost the “normalness” of my mind. The constant dopamine hits from clicking and scrolling and finding out information, or completing tasks. And the unpredictable interruptions from notifications. Even though I’d been smart with reducing notifications, there was still a trap. I would hear a message — open it and look — see the badge numbers accumulating on another app (that I’d turned sound notifications off for) and then dive into that app afterwards, before checking the weather, then the bank account, then the calendar, etc, etc. And before you knew it I’d wasted 20–30 minutes. But worse than that, my brain felt discombobulated. I didn’t like it.

I tried grey scaling the apps on my phone to de-motivate me in using my phone. But that was overly horrible. I value beauty and aesthetics. I couldn’t bear the misery. I restored colour after about 30 seconds. At least let me have joy with a device I need to use!

So what to do about my brain?

I read a book about a woman who used to travel through different continents with her partner, with nothing but a basic backpack, hunting for their own food in forests and jungles, making their own fires and sleeping in tents at night. No screens for them. And she shared of how alive she felt. Of course she was also living outside in nature and exercising extensively. But when she came back to civilisation and had to use devices again, she described the feeling of being sucked into the void of screen addiction. And how this affected her brain. And how she hated it, but couldn’t resist it.

She knew better than most of us the difference to her brain before and after screens? And yet she also was sucked into the screen vortex. Was there any hope for me? Was it possible to have my pre-screen brain back again?

I’ve thought many times about each and every one of my apps. Do I really need them? Can I find other things to use instead — a watch on my wrist, a GPS or map in the car, a stand alone camera, my bank card in my purse, a written calendar, a shopping list at home that my husband and I can add to. Music CDs? All of these things were possible but a lot less convenient. So I would weigh it up… umm and aah… and wonder if one day I’d have the grit and determination to make the hard decision and just do it!

But with kids at schools that communicate via multiple apps and being a content creator on social media and writer, I rely on so many apps just to function in society. And the need is growing — think ‘authenticator’ apps, given our ID security issues today. And so the conclusion… I can’t go app free with my current lifestyle. It’s not possible without causing major problems to myself and others.

And so I’m stuck with my smart phone!

What to do? Perhaps some of you can handle a smart phone with an ease of discipline. But personally I don’t have enough self-control to ignore non-necessary apps. It’s possible for short times when I’m at a motivation spike and life is going well and my energy is OK. But when my energy spirals, or emotional challenges hit I revert to comfort existence, which includes phone scrolling. Then the amount of content in my head builds up and it is overload. Overwhelm. And there I am back again at square one.

Aargh!! Can anyone relate?

Interestingly, as an aside, this was the moment I discovered ‘Medium’. I was researching screen time solutions, but the internet only gave me ‘same old’ content spitted out by everyone in different ways and regurgitated by AI. It was boring, un-inspirational and unhelpful. I eventually found a personal story from someone and was delighted — aha — fresh perspective. But alas it was behind a paywall. Then I found another personal story — but aargh the paywall again. By this stage I was ‘over’ researching on google and since I discovered the two stories were behind the same paywall — and that monthly membership was only $5USD a month, I decided to pay that for two original articles. And that’s why I’m now on Medium!

It was good to read of others struggles and what they had tried. I appreciated it very much. But I still wasn’t settled. I needed a personal solution that was more radical, but also practical. What could I do?

And then I got this new idea…

Some would call it random inspiration. But for me random is cheap and unlikely to work. I usually disregard such ideas. But this idea had a different sound. From my experience with spirituality it was God’s whisper in my ear. So I paid it attention.

“Get a second phone”.

Ooh that’s a new idea. I hadn’t thought about that before. Ok then. Let’s think about this. Could this work? Maybe I could get a second phone just for urgent phone calls and message and take this simple phone around with me everywhere. And then my main phone with all the apps could be kept aside with my laptop, for when I needed to do focused work. At a chosen time for that kind of headspace. And therefore not interrupting the other parts of my day.

So I could take my simple phone on walks in nature, have it with me when relaxing on the couch, when sitting with my kids. I could feel the security of being contactable — did my daughter have a seizure — someone could tell me. And I could ditch the dopamine distraction of my app phone in these moments. But keep and choose the app phone for the times it was truly needed. Purposeful moments, rather than every possible moment.

I got excited with the idea. I saw the potential. But also knew I couldn’t predict how this would work. What would be the pros and cons? I would just have to try it and find out.

I did some research. I didn’t want to spend a lot of money, so I got a secondhand iPhone 4 for $50AUD and found the cheapest phone plan — $10 per month, as I didn’t need a plan with much data. This wasn’t going to break our budget. In perspective, $2.50 per week was a pretty cheap investment to help me ditch the dopamine distraction.

I decided to give my new phone number to my husband and kids, carers and schools only. Not even my parents got the new number. The purpose was for every day running of our household and kids. I figured any emergency from extended family could be easily communicated to my husband and then to me. I didn’t need to complicate extended family with two phone numbers.

I felt the excitement of a new, untried pathway. Could this work? Would it be a success?

Since I had already been wrestling with the pain of this screen issue for a long time, I was ready to dive into the solution with enthusiasm. So when the simple phone arrived in the mail, I was happy to put the main app phone out of reach. It no longer had a place at the bedside table. No longer available before bed and no longer available first thing in the morning. I relished the loss of this. And I sat with the absence of entertainment. And embraced the nothingness of boredom. However I didn’t feel bored or restless. I felt more powerful, more present and hopeful.

This of course was no evidence of success — just the expected optimism of the start of any resolution. What would happen over time? What tests could this new solution withstand or crumble under? Would this effort be worthwhile or a waste of time over the long term?

As I write this I am in the early days of trying this experiment. I am documenting my experience and look forward to sharing the pros and cons. The insights and conclusions.

Stay tuned for part 2!

It’s Complicated

January 19, 2020Anxiety, Autism, Church, Exhaustion, God, Mental health, Parenting, Special Needs, Spiritual, Stress, Uncategorizedchurch, special needs, stressKirsten Jack

And so begins the writing debrief…

Another extreme event with Summer…

Kris is away with half the family at Wilson’s Promontory at the moment. I’m home with the girls. I come and go this time of year, to be with both parts of the family. We can’t have Summer at Wilson’s Promontory. It’s way too hard. So I have to split my time. Lots of work goes into planning Summer’s care when we are away. Carers and family that help do a great job. And for a while Summer enjoys the holiday and space and attention, but then she also misses family. I suspect she’s anxious about Kris not being around. My best guess.

This morning we had a new carer – second shift with the girls. Summer wanted me, so I helped her most of the time. Sarah was happy to have the new carer. Mostly smooth morning. Being a Sunday, we were getting ready for church. When it was nearly time to go, I gave Summer the appropriate warnings, at reducing intervals, then it was really time to go. She didn’t want to leave the computer. That’s normal. Normal resistance. But we got there in the end. In the car.

I had forgotten to tell our children’s coordinator at church that we would be there, so I knew the special needs room would be locked. That’s OK, I would find someone with a key and all should be well. I hoped. I got Sarah to bring extra toys in case there weren’t any there. And I packed Summer’s favourite toys in a bag. Big mistake!

In the car, just before we arrived at church, Summer opened the bag and saw her favourite toys and cracked it. She was fuming and refusing them and shouting and throwing them. Then she was stomping on them. I said, don’t break them, I can’t fix them. That got her attention for a brief few seconds, then it was back to stomping. I gradually rescued all the toys once we parked, but I got wacked in the process. Thankfully I had had the foresight to park with ample space on Summer’s side between us and the next car, so she couldn’t slam open the door onto the neighbouring car. (Mind you she did try at one point)! At first she decided to stay in the car and lunge for the car horn. Beeeeeeep. Beeeeeep! I stopped her. Then she did it again. A man walked past to get to church and kindly invited her to come inside. She shook her head with her agitated mood. He smiled and continued on. I was grateful for his demeanour!

I tried leaving the car several times, to give her space, but she would return to horn honking. So I just sat in the car quietly and waited. Eventually she got out. I took a breath…

I knew the next steps were risky and I prayed for grace.

She entered the church. We were ten minutes into the singing time. She walked down the middle aisle to the front of the church and stood and looked at me defiantly, questioningly. She knows she’s not allowed on the stage. She stood in the front area. I hopped into an empty pew in the third row and joined in the worship time, with my eyes open most of the time. I hoped that she would settle, as she saw me happy worshipping, and not giving her negative attention. It looked like it might work, her face relaxed a bit. But then she was agitated again and edged to the stage with one foot on the step. Looking at me, waiting for my reaction. I calmly shook my head and she kept testing.

The worship rose. I heard the congregation lift. A friend later confided in me, that she felt the congregation knew what was going on, and pressed in deeper with worship in response. I felt it at the time too. I did the same. My friend was praying for me.

Summer edged up the steps. I moved to the front row. I knew that I couldn’t go up to her, as she was agitated with me and this would escalate her. All I could do was stay calm and wait. I took the iPad out of my handbag and silently offered it to her, knowing it wouldn’t work. She shook her head. She climbed up the steps and stood next to one of the singers. It was Rian. She was an angel and smiled at Summer, put her arm around her and allowed her to stand there and kind of feel like she was sharing the microphone. Summer smiled.

While this was going on, Renee led the worship beautifully, pressing in more. She prayed at the end an inspired prayer, thanking God and acknowledging the beauty and differences among us. (Something like that). I was touched.

Ps Dan came up and began to lead the service. He seemed to take it all in his stride and just calmly went about talking. I have no idea what he said. I was fixated on Summer. Summer stayed there, next to Renee. Renee tried to encourage her to go down, but Summer shook her head with that expression on her face again. Renee backed off and waited. Smart. Then she had a brilliant idea. She bribed Summer with the microphone and was able to lead her off the stage, with the promise of holding the microphone. That got her all the way to the special needs room corridor. She let her keep the microphone for a bit. And thankfully the sound guys had turned it off.

Rian came soon after and beautifully requested the microphone back. We patiently waited and conversed, then Summer finally gave it back. All good.

Then the room.

Summer wanted to come back to the main auditorium. No way hosay! Not happening. Not taking the risk again right now! So I blocked her way. This agitated her of course. She kept trying to get past me. I kept blocking. She was fixated. I tickled her toward the special needs room. This got her moving, but didn’t improve her mood of course. She banged the door. It was a door with two glass panes. Then she kicked the bottom pane and it did a spider web smash, staying intact, but cracks everywhere. Oh my!

I got her inside the special needs room and spoke firmly to her. I emphasised words like dangerous, blood and hospital. She became fixated on the door. Sarah and the carer were in the room trying to play a game. Eventually Sarah decided it would be more peaceful for her and the carer to play outside. But she couldn’t exit with Summer in the way of the door. I had to grab Summer’s wrists and drag her out of the way. Sarah got out. Summer came straight back and was kicking the frame of the door. And touching the glass, threatening to push it, watching for my reaction.

It’s such a complicated dance with Summer, trying to stay calm, trying to divert when possible, trying to prevent the glass shattering on the ground and trying to stop her banging the door (which could probably be heard in the main auditorium).

It felt like a lose, lose situation. By intervening, I heightened her and prolonged the episode. But by withdrawing, I ran the risk of a dangerous situation. And the problem was she knew she could get my attention by banging. And I couldn’t just ignore the banging, when the church could probably hear it.

So for the next 15-20 minutes I oscilatted between intervening and withdrawing, intervening and withdrawing. In the process I was hit multiple times, kicked multiple times. She attempted to bite me. She spat on me.

In the midst of this I cried out to God…

“For all of this suffering, for every moment of abuse God, I ask that you multiply my fruitfulness, that more of the oppressed would be set free, that many many others would be brought to wholeness and breakthrough, that your grace and anointing would be multiplied. Use this God for your purposes and glory!”

I knew heaven listened. I know my prayer has been answered.

Eventually Summer agreed to going home. I couldn’t risk going back through the auditorium. I had to get Summer to go outside via the oval to the carpark. We went outside, we walked past the oval. We did it!

Unfortunately the gate to the carpark was locked. Of course it was locked. It is supposed to be locked. Dang!

We went back. I suggested we go around the buildings another way to get to the carpark. Instead Summer decided to go towards the classrooms. She tried every door. And with every door I felt anxiety rise – “what if a door had been accidentally left open?” I stayed close. And every door was locked thankfully. Except for one, towards the auditorium. I was right there and put my foot on the bottom of the door, not allowing it to open. I saw Carlo preaching. I was bummed I couldn’t listen.

We eventually got to the carpark. We got to the car. We got in. We went home. I told Summer she was going to be put in time out.

At home Summer saw the cat and picked it up. That made it easy to get her to the bathroom to go to the toilet. (I had to jump that hurdle before I put her in time out. Otherwise she would deliberately wet in her room. And that would be more work. I needed a break).

Once in her room, we let the cat go. Time for discipline. And I had very, very firm words with her. Three things.

Summer do not go on the stage
Summer do not break windows
Summer do not hurt mummy

And as an aside, please note:

It sounds like this happens more frequently than it does. This was an extreme situation.
I’ve become adept at blocking her aggression so I’ve never been seriously hurt.

In conclusion:

It could have been fine. I just wanted to go to church.

I don’t want to stay home. I don’t want to stop Summer from going to church because it is too hard. I am grateful for an understanding church community, but I don’t want to cause too many problems. It’s a complicated balance.

Next week Summer and Sarah will be at a respite house for the weekend. We do this once a month. I can relax.

After that Kris will be back. It’s easier at church when Kris is there.

We will also be aiming for two paid carers at church. One for Summer. One for Sarah. I hope it works. I’ve done the rostering already.

So here I am at home. I aim to rest. Another carer is with the girls. They are playing ‘schools and teachers’. It’s going great.

I am both unemotional, and also ready to cry at the drop of the hat. I am used to this, but it takes a toll on my body.

I need to rest. But the rest never feels like enough.

I tell you what! My trust in God is being forged! I can’t solve all these problems. Summer’s behaviour. My health. All I can do is trust. It sounds like a nice pad ending, to finish a blog. But it’s my reality. The last six months have often not made sense. I’ve wrestled with God. I’ve been frustrated. And I came to the point where I decided, that I didn’t care what my life looked like. I was going to trust God regardless. I’ve had a hissy fit against obstacles. I DON’T CARE. I’M GOING TO TRUST MY GOD. God knows what he is doing. He knows how to lead me. And I trust his leadership.

And that is my strength. And that is my joy. And that is my breakthrough!

Trauma

August 28, 2018Autism, Emotions, God, Joy, Mental health, Microcephaly, Parenting, Special Needs, Spiritual, Stressautism, God, special needs kids, stress recovery, traumaKirsten Jack

So I’m sitting in my office typing while looking after Summer. Just Summer. She’s not interested in the iPad, which is good because it means she’s engaging with the world. Which is also bad, because she’s engaging with the world. Specifically the kitten (or rather cat). This kitten is very good, but he is meowing sometimes every 30 seconds, sometimes not for a while, most likely from being handled uncomfortably, probably squeezed. Downstairs I hear Rover, the 21 year old cat meowing loudly. I locked him in the laundry for his peace and my peace and for Summer’s safety. She has some new bite/scratch marks from him. Fair enough, he’s not up to being squeezed at his age.

Summer has improved a lot. She’s more gentle and kind, but still doesn’t always know what effect she has. She also doesn’t understand the impact of her behaviour on the rest of the family. When we are at low points, the meowing sound is exceptionally grating and stressful. I’ve been unwell with cold for a couple of weeks and very low energy. And this afternoon Summer kept bending over to pat and kiss Rover and would not listen to my directions to leave him alone. The bites and scratches don’t stop her. I physically pulled her over from Rover, as my patience was thin. So of course she cracked it – not as bad as she used to – just kept slamming a door and making noises. I was scared her finger would get jammed in the door.

I felt the toxic stress build up and didn’t want to shove it down. I wanted to release it. So I allowed myself to scream several times. No-one else was home but me and Summer and the neighbours wouldn’t have heard. I’ve done that once before and it felt such a relief. It was a kind of relief this time too. So then Summer screamed of course, so I blocked my ears, as it has a stress impact on my body.

Summer is so much better than she used to be, but I can sometimes get overly stressed by some of the small things she does – like screaming, or repeating words/phrases over and over, or making the cat meow. The other kids also overreact to these very same things. I’ve come to the conclusion that we are all suffering from a kind of post-traumatic stress.

Recently I went to a carer stress workshop and asked a question – How do I stop myself from getting heightened overly quickly to stress? I explained I’d had a stress related crash 3 years ago and had made major effort to implement healthy self care in many different areas, but I was still having this problem. She said it was probably from trauma. That sat right with me.

So I’ve been praying for God to heal me from trauma. And here lies the other side of my life. God.

I’ve been learning to live as a spiritual being, knowing my place as a child of God, loved, cherished, empowered by his Holy Spirit who lives within me. When I connect with God I can sometimes instantly feel refreshing joy, pure life and fire in my eyes. God is my strength. He is my hope. He is my safe place. My true home.

The more time I spend connecting with him, being in his presence, the more often I feel his empowering life within me, or feel his presence. There is no stress in him. I have been learning that my circumstances are irrelevant. I can praise God and find joy in him in the midst of immense challenge. His love, joy and peace are available in the midst of every trial. I just have to choose to lift my eyes, open my mouth and praise, pray, speak Scripture, speak in tongues, whatever. I just choose to connect and I do. It’s my choice.

And when faith ignites, so too does God’s power within me.

It’s like a secret life that is available to everyone. But you don’t find it, until your spiritual self is awakened. It’s called being born again. And it’s through believing in Jesus.

But there’s a gap at the moment. And it’s been exposed. It’s called trauma. And I’m reaching out for God’s healing. I can’t do it. I want my emotions back to normal again. I want my health completely back to normal again.

In the meantime, God is faithful and I am immensely grateful every single day for every single thing he is teaching me. There’s not a day that goes past that I don’t see him loving me and teaching him. He is so kind and so good and so faithful. I want to bring him glory and I never ever want to disappoint him. I love him so much.

P.S. You may wonder why we don’t just get rid of the cats to eliminate that stress. But here’s the thing. She loves animals. We have a dog too, Rupert, who she spends time with. But she spends HEAPS of time with the cats, because she can pick them up. And most of the time it’s good. And it keeps her settled. And stops her from engaging in other problem behaviours. So the pros outweigh the cons. And the young cats are robust – I don’t think anyone needs to call the RSPCA – they are only little meows – and at other times there is nice purring.

P.P.S For anyone reading this who hasn’t followed our family story, you may be wondering why I use the word trauma. Summer, our 11 year old daughter has microcephaly (small brain) plus moderate intellectual disability plus autism. Sarah our 9 year old daughter has the same, but without the autism. It is very time consuming and patience demanding to get cooperation with the smallest of tasks with both the girls. This is very emotionally draining. Plus Summer has had and still has a range of challenging behaviours including screaming and various types of aggression of various degrees. Plus unpredictable behaviour that keeps us on edge and on constant high alert. But she is also REALLY lovely and gorgeous and loving and beautiful and AMAZING! We are actually very blessed!

It is of course a very different type of trauma to others, eg not as extreme as a road accident. But it is ongoing and every day to various degrees. And over time this wears down our reserves.

Summer and the hole

August 17, 2017Autism, Emotions, Exhaustion, Mental health, Microcephaly, Parenting, Special Needs, Stressadrenal crash, autism, breakdown, burnout, disability support, exhaustion, NDIS, special needs, stressKirsten Jack

We really need early access to NDIS (National Disability Insurance Scheme). I’ve been pressing DHHS (Department of Health & Human Services) since late last year. Our ISP funding is a big blessing, but the 15 hours per week of carer support has not been enough for the last 12 months. I’ve had to go to numerous other sources to supplement our funding, as our needs have increased.

We just can’t cope with Summer in the context of 4 other kids (including one who also has a moderate intellectual disability). As mentioned on previous blogs, my body shut down in June 2015. I went numb all over my body and was in bed the next day dead tired. Then dead tired every day after that. Hubby took six months off work to care for the kids because I couldn’t. Sometimes I tried to help. I would become noise sensitive, become overwhelmed very quickly and have to run back upstairs. Upstairs in my haven I was happy and relieved. I could type on the computer, talk on the phone, catch up with friends. Downstairs with the family I could only tolerate small doses. Not helpful when you’ve got five children, two with extra care needs. Kris soldiered on for 6 weeks and then announced he wasn’t coping. So I left my blissful haven and engaged the disability world, seeking further help. Welcome ISP funding and 15 hours per week of carer support. We didn’t know if we could use it. We hadn’t done it before. I didn’t want other people in the home. I thought it would be intrusive. But we weren’t coping so we had to.

It started slow as we began to find carers and try out different shifts. It was hard finding carers who I felt comfortable with and who were also willing to work with Summer. Slowly we started increasing our use of hours. Six months after my crash Kris was able to go back to work, as carers were helping, and I was recovered enough to come back to a reduced load. Then for the next two years, up until today, it has been an up and down journey. I would have a mini crash, then realise we needed more support, so I would increase the carer hours or put in another shift. We’d try that out for a while, then I’d crash again, we’d realise more support was needed, so we’d add more. It was a slow journey. We didn’t want the intrusion on our lives, but we had to get the help. It took a long time to establish reliable carers. At one point I think we tried about 7 or 8 new carers in the space of a couple of weeks, as we had again lost several and were desperate to fill shifts. This was exhausting. Kris would sometimes encourage me to find more carers, but I would be too emotionally exhausted to pick up the phone and call yet another agency. And I didn’t want to face interviewing and training another carer. I needed breaks between carer tryouts.

Late last year we realised we couldn’t cope having Summer home on the weekends anymore. We desperately called DHHS for extra funding, threatening relinquishment if we couldn’t get the support we needed. This was not an empty threat. If I kept crashing and if Kris crashed we would be forced to let Summer go. We desperately did not want this to happen. Over several months our case manager put together a plan worth five times a much as the support we were currently receiving, to cover total weekend support (including active nights), as well as weekdays. The plan was approved, but is now obsolete as NDIS will replace this from April 2018. So they are not approving increased funding. But we can’t wait until April next year.

In the interim we worked out a rotating weekend plan for Summer, involving family, friends and carers and a respite house. She also started at a second respite house. The rotating plan was not without its problem, but fortunately the second respite house was a brilliant success. They had availability for Summer to go there approx 3 weekends a month and they have learned to handle her beautifully. I am very happy with this arrangement, so she now goes there most weekends until Sunday 9am, after which she comes to church. Then Sunday afternoon she goes out with carer, family or friends. Or she stays home and we farm out the other kids.

As it stands, as well as Summer going to respite on the weekend, we have support every school morning and every school afternoon. Support includes dressing the girls, doing their hair, making their beds, driving them to and from school, showering Summer in the afternoon, taking the girls to their weekly dance program, folding washing, cooking dinner. That last one takes the cake. I felt for a long time that was my responsibility. But when I went away on a retreat for 3 weeks in February this year (to try to recoup my energy), I felt God encouraging me to extend the carer shift later to include dinner being cooked. This made an enormous difference. My resilience is low, so I can’t do much before needing a rest. So it was tough cooking dinner, then going straight into sitting at the table with the kids and family time afterwards. I would be grumpy mum at the table, often unable to sit there, or having to wear headphones to block the noise. Now I can come to the table fresher and more emotionally available. That being said, I wouldn’t say I am fresh. At 6pm I am tired. But at least I am not a wreck.

I am praying that my energy will be restored and my emotional resilience restored. It has gutted my body’s energy. It is very frustrating. I have dreams that I want to pursue. But every day my energy is unpredictable, up and down. I have tried so hard.

We really need early NDIS! Currently we only have funding for carer hours. With NDIS we can also request funding for household maintenance related to Summer’s disability. Today Summer did damage to the house. Twice. This morning she was dressed and ready and happy. Then she didn’t want to go out the door with the carer to the car to go to school. She kept screaming and grunting and resisting. Eventually I came downstairs and suggested the carer go and start the car and I would bring Summer out. Unfortunately I neglected to lock the upstairs door. Summer saw the opportunity and bolted up. I groaned and followed her up. She kept going in different rooms and attaching her attention onto different things and refusing to budge. I used lots of different tactics to try to get her to go downstairs. Eventually we got down. But then she dropped to the ground and refused to move. I had lost patience by now. I was starting to get emotionally overwhelmed and got very cross and bossy with her and physically forced her out the door. Then locked it and allowed her to melt down outside, in the hope she would get cold and realise she had no other option than to go to the car. Not great handling of Summer here by me. I was under time pressure and lacked the emotional resilience needed. Unfortunately Summer expressed her rage by kicking the door and the window next to the door. It broke. That’s the second time she’s broken that window. It took another 10 minutes after that for her to get into the carer’s car. I got in my car with the other kids who were now late to school and started the engine, which often triggers Summer to hurry up. She ran over for reassuring kisses and cuddles several times. I prayed with her and embraced her and told her I loved her and she was a blessing. Then she ran back to the carer who was amazingly patient and kind with her. Once she was strapped in the carer’s car I drove off, in tears.

Then this evening. Kris is away at the moment for work for two nights. So I put both the girls to bed. It was a normal bedtime routine. Normal resistance. Pretty good actually. Summer wanted lots of cuddles. I stayed extra time with her. We talked a bit. I washed pen marks off her hand with a wipe. She wiped my face. She stroked my hair. I stroked her hair. We cuddled lots. She sighed. It was really nice. I thought – this is great – she will settle really well. And usually in the evenings she settles really well. Most nights we don’t hear from her. Occasionally she will bang or make noises, but not too much. She knows she won’t achieve anything. The door is locked and that is it for the night.

But not tonight. She banged a lot. I thought I’d better check. There was a hole in the wall. Sigh. My dad has already patched that hole twice, and my husband patched it once or twice before that. Well this time the hole is even bigger. She was quite happy banging. She wasn’t angry. She just liked banging and making the hole. We need NDIS now!

I keep a spreadsheet of all the carer hours and costs. I’ve worked it out for the whole of the current financial year. By my calculations, we will run out of our funding by January/February, depending on whether I can access some other sources. That leaves us with no funding for at least 3 months. Not going to work!!!!! I’m now going to try getting an MP involved, to advocate for early access to NDIS. DHHS are also working on our case to achieve further funding to bridge the gap. Otherwise we are stuffed.

But really. We are not stuffed. God has taken care of us thus far. He will continue to care for us. He will make a way. I don’t know how. But I know he will. He is my anchor. I trust him. That’s my hope. I trust him.

Love Interrupting

My story of the love of God in action in my everyday world. The fun of it. And the transforming power of it.

Four Glimpses of Possible

January 20, 2017Anxiety, Autism, Emotions, Excited, Freedom, God, Grateful, Inspiration, Joy, Laughing, Love, Mental health, Microcephaly, Parenting, Peace, Special Needs, Spiritual, Stressfreedom, inner transformation, overcoming, possibilities, practical strategies, spiritual breakthroughKirsten Jack

God gives me glimpses of things. Of what is possible. Of what it would feel like to be transformed by him in some specific way…

How it feels to have absolute peace in my gut and how this dissolves stress in those around me
How it feels to react with powerful love instead of anxiety in stressful situations
How it feels to have an absence of pride
How it feels to have body and mind vitality, through eating the right diet for me

These glimpses have been momentary, but profound. Tastes of what is possible. So now I’m wrecked for anything less. How can you be satisfied with the ordinary when you’ve experienced freedom in a certain area?

I’ve heard countless sermons about having peace, of having love, of having humility and of eating right. But nothing has motivated me like the experience of feeling the momentary freedom of what it is actually like to live in this zone. Honestly it became real, incredible, beyond my ordinary dreams of what is possible. They say Jesus is the best. Haha he actually is. And way better than you think.

So what do the ravings of this Jesus loony amount to? How did the glimpses happen? What did they feel like? OK one at a time…

Peace in my gut

With five kids, two with special needs, the stress was extreme and had impacted my body to breakdown point. I lost my energy, like someone pulled the plug. My husband stopped work to take care of the kids while I tried to recover. After six weeks he couldn’t cope so we reached out for a DHHS package for carer support. Six months later we were operating with carers in the home 15 hours per week. My husband was back at work. But the stress didn’t disappear. And I was in a weakened state to handle it.

It got to the point, where wise advise from a close family member was to put Summer (our middle daughter with moderate intellectual disability and autism) in a home for 6-12 months so we could recover.

I was desperate. A dear saint urged me to rest in Jesus.

So I determined to try.

I sat in my lounge chair. I was too tired to pray. I just shut my eyes and sank down deep into a posture of rest. But different from normal. I imagined myself resting in Jesus. And then I remember that Jesus has no weights for me, but wants to unburden me. Then I relax deeper, with relief that I didn’t have to strive. Then I start to laugh and cry and laugh and cry. It just kept bubbling out. My friends call it craughing.

I did this on and off for three days. I would feel myself getting filled with feelings of relief, and of spiritual living water going inside my gut. Hard to imagine I know. It wasn’t long periods of time. I would get distracted, then concentrate again and do the inner posture of resting in Jesus. Trying to do this did nothing. It was when I knew Jesus was my rest, that the faith switch went on, and then the craughing would start. So good!!!

After three days, I felt peace in my gut. It felt wonderful. I can’t describe what a relief that feeling was. All I remember is always feeling uptight in my middle. But I couldn’t find any uptight feeling, even though I was looking hard for it. Just peace. And this feeling of living water.

So then the kids came home and I braced myself. No help from carers or hubby that night. How would I cope! Well the kids came in all manic, bubbling over through the door. They came near me and I watched their energy dissolve. They became settled and at peace without me saying a word. I’ll never forget that. I’ve read about that. But I actually experienced it.

That’s what I need every day. God give me that glimpse back. God help me build that as consistent reality.

Love overflowing without any striving

Another day, I’d had a full-on hour managing Summer in the context of a car trip with all five kids, after an outing in the city where Summer refused to go back to the car. Then I got home and the three youngest ones were full-on. I felt the stress and anxiety peaking. This battle started raging inside me. I was at ‘too much’ point. My mind was telling me to go upstairs and hide and tell my husband I’d had enough. But something in my spirit was battling this. I felt it. I stayed put, feeling and watching the inner battle from outside myself. My inner spirit was wanting to overcome. It was wanting to rise above the status quo of stress overload. This almighty groan emerged from deep within me, shocking me and my kids. And I burst forward to the kids with arms outstretched and blurted out ‘I love you Summer’. And then I poured love out all over the three kids. I felt filled with immense joy and love. I was overflowing, without stress or anxiety. The situation was transformed. I was transformed. I didn’t have to rest and recuperate from stress. I was energised and inspired.

I need and want this all the time. The status quo is so ordinary. This was extraordinary.

Absence of pride

When living in Sydney I had this moment. Totally unplanned. I felt the absence of pride. I know that sounds weird. But it was very distinct. I had an immense clarity of mind and uncluttered panoramic vision. I could see far and wide in my spirit, without cloudedness or confusion. I realised in this moment that this was the space I needed to live in, in order to make wise decisions in ministry and if I ever wanted to lead effectively in any sphere. I willed the clarity to stay. But after maybe 5-10 seconds it left and I went back to my immersion in my own personal level of pride. Which as a continual presence, becomes unnoticed and normal. But now I noticed it. This robber. This thief. This pride! How I despised it and wanted it gone. It clouded my vision. I couldn’t see very far ahead. The difference was immense. Like trying to walk in a fog.

This experience prompted me to pray on three occasions in my life for God to do whatever it would take to get rid of pride. Within a day or week after praying each of these prayers, I subsequently experienced the three most humbling, difficult and painful events/seasons of my life. One day I may share these stories. One of these was the adrenal crash I have referred to. This was the least painful.

Before praying the second time, I experienced the glimpse of the absence of pride again. It was in our ensuite in Dingley Village. In that moment I recalled the glimpse I had experienced years earlier and savoured the moment, wishing it would stay forever. That gave me the courage and motivation to pray the second time for God to get rid of any remaining pride. I wanted to live in that space. I don’t want to live in any other.

I have learned much, but I am still on the path.

Body and mind vitality

God led me on a fast. I hate fasting. I get really grumpy when I don’t eat. And I can’t afford to be a grumpy mum. The demands are strenuous enough without adding that in the mix. So I decided I would fast everything except fruit and vegetables.

After one week, I felt amazing. I guess it was like a de-tox. But I was starving. I did a little complaint to the Holy Spirit about this and I felt him say to add rice. I was happy. For the next two weeks I had rice and fruit and vegetables. I felt full and I felt great. Then in the last week unexpectedly I felt him say to add meat, then a few days later to add eggs, then on the last day to add cheese.

My body felt clean on the inside. It felt refreshed. My mind felt clear and uncluttered. I felt alive in my body.

The day after I finished the fast, I concluded that God never let me eat flour or sugar.

I decided I would like to continue eating like this.

I failed and went back to my old ways. But I never forgot how good I felt and have wanted it ever since.

Last year I gave up flour (mostly) and made it a lifestyle. It’s now normal for me. Then in November I watched ‘That Sugar Film’ and that gave me the impetus to drop sugar. I went cold turkey and I don’t want to go back. I love being sugar free. My emotions are lighter. No depressed feelings. My head is less clouded. No cravings.

Big wins dropping flour and sugar. But I still need to have a higher proportion of vegetables, to experience the reality of the earlier fast where God taught me how to eat. Isn’t he smart. He knows my body better than any doctor. And he knows yours too. We are all different.

So I’m not fully there yet, but I’m on the path. I’m seeing change. I’m building one step at a time. And the glimpse is becoming a reality.

Conclusion

So just recently I had this awesome thought. God has given me glimpses of magnificence spiritual transformations – peace, love and absence of pride. Maybe, just maybe, these also can become my everyday reality, rather than one-off tantalising experiences.

If I follow the logic of the food experience, then it is just a matter of taking small steps every day, in order to build a lifestyle, which then becomes my everyday experience. I can do this!

So I’m starting with the peace in the gut. I’m practicing this every day – 20 minutes X 3. This is doable. I already have 20 X 3 as my normal rest routine, which I have been practicing for years. Now I just add Jesus to the rest in this same routine.

I’m going to win. I’m going to overcome. God has shown me how. And I just have to decide to do it – and I have – and then do the hard yards – and I am.

I’m going to be the peace queen. Not a pride statement here haha. Just a joy statement. Hehehehehehe. The peace queen!

And then wait until I become the love lady.

And then – wow – the absence of pride. I don’t know to walk that journey yet. I’m praying God builds humility more and more. He can do it. He can. He can. He doesn’t give glimpses for nothing.

It’s awesome walking with Jesus. He knows the path. And his path is brilliant and full of surprises that are out of this world. He gives glimpses to keep us going.

What glimpses does he have for you? What is he wanting to build in you? What has he done already?

Love to all

December 27, 2016Anxiety, Love, Memes, Mental health, Special Needs, StressKirsten Jack

Summer’s Doggy Heaven

December 22, 2016Anxiety, Emotions, Grateful, Joy, Mental health, Special Needsanxiety, assistance dog, autism, companion dog, special friend, special needs, therapy dogKirsten Jack

There is not a day that goes past that I don’t feel a sigh of relief, looking at the epitome of tolerance – Rupert – Summer’s doggy best friend.

This dog is a gem I tell you. Everyday he gets head-locked by Summer and held at ransom for long periods of time. He just takes it. He lies still while Summer rubs her face in his fur, strokes his ears, pulls his tail, squeezes his middle, leans all over him. He gets a lot of loving. And if Rupert tries to leave, Summer grabs his collar or his leg and bosses him back into position. She is strong. Rupert is very strong too. But Summer has managed to work out how to keep him.

That alone earns Rupert his keep every single day. And it happens multiple times every day. It’s very comforting for me as a mum to see this. Sometimes Summer just needs some time to re-focus, re-energise and have space from others. Rupert is a safe place for her. He is a walking, breathing therapy tool. In those moments where she is with Rupert, she is not melting down from overload, she is not getting agitated by noise or movement. She is in a happy place.

We often deliberately bring Rupert for car trips, as she loves to hug him. This makes the car trip peaceful, except for occasional demands for me to join in the hug fest while driving. It can also get problematic if Sarah is in the car, and Summer pulls Rupert to herself. Sarah knows how to express her mind and boy does she do that!

Rupert is an awesome blessing to the whole family. Stress relief and fun for everyone. Josiah loves having him sleep in his room overnight. (Summer can’t have him, as we can’t trust her unsupervised with him for that length of time. She might pull his ears and hurt him). Micah can’t decide whether he loves me more or Rupert more. He thinks he might love Rupert more. Rupert is always coming up to me and laying his head on my feet or jumping on the bed to lie next to me. (Yes we gave up the ideal of no dogs on couches or beds, after the trainer told us it was good for autistic kids to have the dog next to them on the couch etc. So I get an extra cleaning job now – vacuuming the couch of all the dog hairs!!!) Sarah can spend ages with Rupert, even sitting on him while on the iPad. Kiara and Kristin love him too.

Rupert is a great excuse to get out of the house and in the fresh air and sunshine, as he lives to chase the ball. I take him for a ball throw in the mornings. And Josiah often takes him out too.

Rupert brings down the anxiety in the home just by his presence. We noticed this considerably in the month after we first got him. The first six months was a huge blessing but Rupert was also testing boundaries. Now he has settled down beautifully and I think he has accepted that we are his forever family. He likes us, especially me for some reason. Many of us when tired or upset have been known to give Rupert a hug and cry on his doggy shoulder.

He also seems to be quite protective of Summer. If Kristin is fooling around loudly and actively with the girls, Rupert starts barking at him. Same if I give the girls a smack. He doesn’t like it and barks. I feel chastised!

I feel grateful every day for him. He can’t eliminate all our problems. But he has provided massive assistance. More so than any other strategy.

I’m reminded again of all the many individuals and groups who helped make Rupert happen for our family, especially my dad and Heatherton Christian College.

I would like to add too, that Rupert is extra special because not only has he been specially trained as a companion dog by ‘Dogs For Kids With Disabilities’, but he is the only dog that was able to be successfully matched with Rupert in the three or four years that we were waiting. All the other dogs that we met along the journey were also very high quality. And many of them from special breeders, that breed particularly to achieve the perfect characteristics for assisting disabled people. But Rupert was the right match for Summer.

We are SO blessed!

Special Needs Siblings – What Do They Really Think?

December 21, 2016Emotions, Parenting, Special Needs, Stressfamily, fun, honest response, special needs siblings, stressKirsten Jack

Today I got asked to collect some responses from three of our kids (Kiara – nearly 14, Josiah age 12, Micah age 6), regarding life with Summer (and I included Sarah too). There was the expected negative response at the start and also some precious gem statements later. Here’s the unedited version…

Question: What is it like having Summer & Sarah (S&S) away?

K – relaxing, more peaceful

J – don’t have to worry about leaving stuff out

M – don’t have to worry about locking doors

J – can use technology, cos they won’t pester

K – can play proper games with mum and dad

M – can play all the games that S&S won’t understand

K – don’t have to hibernate in bedroom

M – more relaxing, more fun

K – more attention from parents

Question: What is it like having Summer & Sarah here?

K – Parents say, ‘Get out of the way, the girls are here’. Parents are more busy. Lots of screaming. Have to be careful with what you do. If you bring out food, it will distract their routine. If they’re annoyed, you have to get out of their way

J – Less attention from parents who are focused on S&S

Question: How do you feel about all this?

M – Feel great when S&S not here

K – When S&S are home, either annoyed/angry, but it can also be fun. More relaxing when S&S not here, but not the excitement. “It can go both ways”

J – I like it when S&S not here. But also like playing with them, it’s nice. Annoying with screaming, shouting, poking tongue out. “I go to my room, read, play with lego, to relax, when they do this”

M – they scream at you for nothing

J – boring when S&S not here (& other siblings away too). Likes spending time with them too.

K – “When they’re away it’s like there’s an empty space. When they’re here there’s a warm feeling”

M – when they’re away, you can steal stuff from their room which is actually yours

J – When they come back it’s nice listening to their laugh. Their happiness is contagious. Everyone can have nice feeling.

M – When S&S here, feel great. But when they scream/shout/cry I feel horrible

K – Stressful

M – And you get more smacks cos when they’re here, you whinge more, cos you’re upset with them

Question: Does anything need to change?

All – stop S&S screaming, Sarah quieten down. Inside voices

K – We need more weekends without them. More ‘us’ time, with just the 5 (2 parents, K, J & M). More outings for just them so we get a break. Also more outings as a whole family. Also more outings for just the 5 of us.

M – no more whinging

K – S&S don’t get in trouble. We get all the punishments. (I asked, is that true? K said – some of the time)

K – They need to learn to share

J – They need to learn not to go on my iPad

M – learn not to do naughty stuff

Free to be

A blog by Kirsten Jack

Category Archives: Mental health

House Hunting

My Current Reality of Seizure Watching

Perseverance

The Purpose and Joy in the Trials

Child-Like Trust

Adulting with Joy and Peace

The Power of Non-Judgmental Thinking in Daily Living

It’s Complicated

Trauma

Summer and the hole

Love Interrupting

Four Glimpses of Possible

Summer’s Doggy Heaven

Special Needs Siblings – What Do They Really Think?

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