All posts by Kirsten Jack

Unlimited

Excited, Freedom, God, Inspiration, Spiritual, , , ,

The Fruit of God: Endless and Amazing Discovery

Photo by frank mckenna on Unsplash

God is unlimited.

What is the fruit of that?

A heck of a lot.

Think about it.

I remembered a song about God — “Your faithfulness reaches to the skies”. And I thought, literally that is not true. It might be nice poetic licence. But the reality is that his faithfulness is never ending. It is without limit.

People compare things about God to the sand on the seashore. Because you couldn’t even begin to count every grain of sand. An impossible task for us as human beings. But even the sand analogy is no good. Because sand is limited. There comes a point when there is no more sand left. But God is not limited.

Or what about the water in the ocean? How could we even begin to explore every depth? But yet again the analogy falls short — there is an end to the water!

I thought about the joy and pleasure of revelation; the acquiring of beautiful knowledge. And subsequently the human fulfilment that is found in growth as a person. This too, I realised, is without limit. We will never in our lifetime run out of things to learn about, or ways to grow as a person.

But it goes further… after physical death, if you believe as I do that our spirit continues on, then the journey continues. And in this journey, there is still the potential for growth, for revelation and the acquiring of knowledge. And this is in the same category of unlimited. Because the creator of the universe and subsequently all that there is to discover is unlimited.

The fruit of God. Endless and amazing discovery!

How A Second Phone Helped Me Overcome Screen Addiction

Anxiety, Freedom, Inspiration, Mental health, Social Issues, , , ,

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

Freedom, Inspiration, Mental health, Social Issues, , , ,

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!

Diamond

Emotions, Excited, Grateful, Inspiration, Joy, Spiritual, Uncategorized, , ,
Image by Lars Plöger from Pixabay

We all have struggles. And we are all forged through them. Like diamonds…

I felt the pull to write these words, to articulate the intensity of the journey and the beauty that unfolds and that I hope for. But also for you too.

For me this composition is an interplay between me and my Creator. For you it may mean something else. I hope it will inspire and encourage you to value your challenges and see the possibilities…

Diamond

Intensity of formation
Heat and pressure
Again and again
Relentless

Hiddenness and obscurity
Humble beginnings await discovery
Thrill for the avid seeker
Determination, toil, persistence
“Eureka!”

Eye and hand
Of Master Craftsman
Vision of possibility
Skillful cuts
Fastidious polish
Care and cherishing

An original

Unveiling now
Father is proud
Resplendent beauty
Stunning multi faceted light

It is very good
Inner Hallelujah erupts
Sacrifice’s reward
Diamond of great price

You

.

Lockdown 4.0

Uncategorized, , , , ,
Well it’s lockdown time here in Vic. Well in nearly 4 hours. So how are we all doing?
 
For me, it kind of feels like a blur this time around. The adrenaline is not there so much. Maybe just a mix of numbness and peace and anxiety all at the same time. Is that a thing?
 
School at home again! Oh boy. I called Summer’s school 6 times over an hour and finally got through on the sixth time. Maybe everyone was calling them. I got put through to the lady I needed to speak to straight away and told her our situation. I’m requesting Summer be allowed to go to school, due to our changed situation of vulnerability – her current unpredictable violence due to the new medication and my current low energy state over the last month. The lady was very sympathetic and understanding. The school is great. I’m hoping for a YES tomorrow morning. Will wait and see.
 
In the meantime I contacted our carer team and asked for help over the next week. I’ll work out a new roster during school hours for Sarah (and possibly Summer if she’s not at school). I’m so glad we already have a great carer team with so much home and caring help. We are blessed! But there are plenty of unfilled gaps still. I just have to laugh – I’m sure it will work out – what can I do but laugh and take one day at a time.
 
To be completely honest, I also do a lot of trusting God. I don’t pray a heck of a lot about our problems (unless I’m in a group, and I can stay focused easier). But I do a heck of a LOT of trusting and checking in with God and listening. I know God’s got my back. He knows what we need. And he’s paving the way already. And he will take care of us. And that helps us rest easy. As an aside, it’s the little things you notice it with. Like dinner tonight – it just fell into place with minimal effort. Kris got some meat out and then told me. So I fried the rissoles and then remembered we had left over veggies. Got prompts from ‘you know who’ to mix it all together with sour cream with the cut up rissoles. And it worked. And everyone loved it. Easy peasy lemon squeezy Japanesy as my daughter Sarah says. (No offense to the Japanese -it just rhymes). So me and God are good pals. And we do life together.
 
So back to today…
 
Summer came home in a good mood with the carer. She had a good time at after school care too. Phew. Good to hear. I came downstairs and she was quietly and calmly colouring in at the table. A favourite activity. I started cooking some rissoles in the frypan and relaxed somewhat. I even started to gently sing, ‘at the sound of your name”, at which point I was rudely interrupted by Summer yelling, ‘no singing’. She then shoved the pencil case right off across the table, with pencils scattering over the floor. I stopped singing.
 
It wasn’t the moment to teach her to clean up her mess. She’s too unpredictably volatile at the moment. I’m not willing to pay the price. We need peace in our home. And there’s no point me telling her off for being rude or self-centric. She doesn’t get it, and not only does it not change anything, but it heightens her and things escalate. The best thing I could do was be silent and hope she resettled herself. She did. After a few minutes I discreetly moved to pick up the pencils, not wanting to disturb her focus.
 
I got back to cooking with a knot in my stomach. All quiet drawing for a while. Phew! Then a sudden table slam. What was that? I don’t know. I considered getting headphones, in case of further outbursts. But she stayed settled after that. I slowly brought her dinner over and in slow gentle motion put it off to her side. Close enough to be within reach. Far enough away not to threaten her. She smiled and said ‘thank you mummy, yum’. Ooh that’s good. I like that.
 
I called the boys down for dinner and directed them to eat in the loungeroom in front of the fire. They probably thought it was to take advantage of the fire. But no, it was to avoid triggering Summer, by them being in the same room and making noise and movement. I didn’t tell them that – I don’t want them to feel everything revolves around Summer. It all went well. Me and the boys had a nice dinner. Summer had a nice dinner and drawing. Kris and Sarah were out on a daddy daughter date.
 
Summer is still drawing like a champ, so I’ve snuck upstairs to write.
Kris has just arrived home.
 
Soon I get to transition Summer to toilet and possibly shower and later bed. Think of me. Hoping for the best! 😊

It’s Complicated

Anxiety, Autism, Church, Exhaustion, God, Mental health, Parenting, Special Needs, Spiritual, Stress, Uncategorized, ,

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.

  1. Summer do not go on the stage
  2. Summer do not break windows
  3. Summer do not hurt mummy

And as an aside, please note:

  1. It sounds like this happens more frequently than it does. This was an extreme situation.
  2. 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!

Summer and the Microphone

Autism, Church, Emotions, Freedom, Laughing, Love, Microcephaly, Parenting, Special Needs, Spiritual, , , , ,

This morning was rather eventful at church.

I had been in two minds whether to go. I was rostered on to sing in the band, but my energy had taken a dive this week and I was too exhausted to get there at 8am for rehearsal and wasn’t even sure whether I would have the energy for the whole church service. I was really bummed. I REALLY love singing. Kris was at Bunnings for a fundraiser BBQ with Josiah. And so the backup plan was to send our carer with Kiara, Sarah and Micah, and I would stay home with Summer. But I HATE missing church. If I couldn’t be there to sing, at least I would be there to WORSHIP. So the plan moved to coming for the first half hour, then leaving.

It got better. One of the young adults was asked to help in the special needs room with Summer and Sarah, to help our carer. So I didn’t have to leave early after all. She did a brilliant job. But as often happens, Summer decided she was ready to leave, before anyone else was ready for her to leave. It was 11:30am, after being in the room 90 minutes, so she did pretty well. But when Summer wants to leave, woe to whoever wants to stop her! The carer rapidly sent me a text to warn me. I didn’t see it until later, as we were all standing for the final song and altar call.

As I was worshipping with my eyes shut, I heard a familiar sound from far away, ‘mummy’. I’m well trained to respond quickly, and I must admit, with panic. What was happening? Where was she? Uh-oh. After a quick scan, I discovered her at the front grabbing the shoulder of a guy who was being prayed for. I think she thought it was Kris, as he is a similar size and similar hair. I was quickly out of my seat charging to the front, whilst simultaneously chiding myself for not being more discreet.

By this point Summer had moved on, wandered across on the floor in front of the stage, unsure where to go. I caught her attention and thought that would be it. Mummy found!

But no! Microphone found!

She spotted it on the front row, where the preacher had left it, in order to pray for those at the front. With speed, and before I could do anything, she moved to the microphone and with glee picked it up. Horror and humour set in. My face doesn’t hide emotion very well. I could only imagine the entertainment my demeanour would have given anyone looking on. I need discretion practice.

Summer wandered back to the middle of the front area with the microphone, holding it up to her mouth, then checking it, holding it back to her mouth. Then she studied it carefully looking for the switch. Uh-oh. I was in a bind. What do I do? Knowing what was coming next, I looked back at the sound guys. I don’t think they knew. I wanted to run back there and urge them to turn the sound off, but that would waste precious time and they might not know which microphone to switch off. I could only hope someone else would take the baton and do the right thing.

My brother Matthew to the rescue. Standing in the aisle, with purpose, I saw his position and gave him the cut throat sign. He headed straight to the back. In the meantime Summer had found the magic switch. Uh-oh. Did it have to happen right now? While everyone was praying? In such a holy and focused moment?

The switch was on. And she was live. I lunged and grabbed for the microphone. It was a dumb move. It was never going to end well. Of course she resisted and screamed loudly, right next to some poor soul being prayed for. I quickly let go and backed off to give her space. Thankfully the sound guys had done their thing and she was muted, after only 1 second of sound. She focused on checking that switch again.

I shuffled back to the front seat and smiled helplessly and knowingly at Darryl, who knew all to well. He and his family had spent many weekends hosting Summer at their house to give us a break. If anyone knew, he did.

I forgot myself and starting worshipping. It’s my default. I can’t help it. The music’s going. I can’t help it. Then I remembered myself and opened my eyes to check on Summer. The meeting leader, Chris was attempting to do the right thing and get that microphone back. Summer gave a snap, ‘No’ and then snapped back to her worship zone.

What can I say? This crazy mix. Summer defiant one moment, worshipping the next. Defiant. Worshipping. Defiant. Worshipping.

It kind of sums up what it’s like living with Summer.

Kris heard all about it. Four of the guys from church turned up at Bunnings. Kris was sharing with me later. He was crying. He was so touched at the love these guys had for Summer. Their pride in her. Their lack of embarrassment. I shared about the women’s response. Their humour, their love, their support. We both cried. We have a great church.

Summer took about 25 minutes to give the microphone back.

It talked to Niall, the sound guy. We have a plan. I’m buying Summer her own microphone. I’ll keep it in my handbag for next time. Hopefully for an easier switch. The photo, is the one I’ve ordered for her 🙂

Scored

Emotions, Grateful, Inspiration, Joy, Love, Marriage, Parenting, Spiritual, , , , , ,

Today God has so kindly allowed me to experience more fully what it is like to LOVE my family, instead of seeking my own good. I totally suspect God did it. I know he did.

I was sitting at the table playing a game with my husband and son. I was frustrated with the noise of the younger kids, irritated by my husband’s drumming fingers and my son’s exasperated noises. I felt like I didn’t want to be with them. And then I remembered how I had been choosing love with my husband, especially in moments where I was NOT inspired. And so I decided to choose love at the table in this moment. I started thinking, what would they want right now? I decided to play quietly, to speak kindly. It was like a gentle battle, of going back to my selfish ways, then choosing love. God made it easy for me.

Then at the end of the game, which I have played hundreds of times with different people over the course of my 42 year life, something happened that had NEVER happened before. The three of us ended up with identical scores – 195 each. We were all in disbelief. My husband took a photo and texted it to my dad, who also loves the game.

Afterwards I felt that the scores were a sign. A sign related to my choosing love. By choosing love, the three of us ended up level, equal. By choosing love, I did’t stand above in pride or judgment. We ended up all winning.

As I came upstairs and sat at my desk I was full of joy. Light, refreshing joy (not happiness). It just flowed through me, effortless.

I am so grateful to God for this experience. I long to remember to live this everyday. I know I need to practice it. New things take time to learn. And I know God will continue to give me the grace to learn this. He knows how much I long to live fully from love, not self ambition.

Hero or Fool?

Bible, Freedom, God, Inspiration, Spiritual, , , , , , ,

I keep thinking about the story of Chau, the 26 year old Christian missionary who visited the Sentinelese people in mid-November, in the hope of converting them, and was killed with arrows on his third visit.

There’s been much criticism of Chau, which I can understand – that he shouldn’t have gone there (it was illegal), he shouldn’t taint an ancient civilization with other religious ideas, he shouldn’t expose them to possible germs that could kill them and he shouldn’t have put the fishermen who transported him at risk (they have now been arrested). And that he was a fool (or crazy) for putting himself in danger which got him killed.

On the other hand some Christians would see him as a martyr. He died for his faith.

I can understand all those points of view.

What is sticking in my gut with this story, though, is the response of some Christians. The response being that Chau was misguided, that he went too far, that he lacked wisdom, or that he had mental health issues. I can understand that response from a non-believer. But it agitates me that a believer would think this. It makes my spirit cry out that maybe they don’t know the Bible. Maybe they don’t know how valuable Jesus is. And that he is worth even dying for.

I think of these passages from the Bible…

Matthew 16:24-25…  Then Jesus said to his disciples, “Whoever wants to be my disciple must deny themselves and take up their cross and follow me. For whoever wants to save their life will lose it, but whoever loses their life for me will find it.

Acts 21:13… Then Paul answered, “Why are you weeping and breaking my heart? I am ready not only to be bound, but also to die in Jerusalem for the name of the Lord Jesus.”

There’s heaps more Scriptures on that theme of persecution/death for your faith. Plus heaps of examples of disciples breaking the law by preaching the gospel. And then ending up in prison, because what they did was illegal. And most of them got killed in the end.

This was normal in the Bible. And they were willing to pay that price, because they knew the value of the gospel. It’s worth more than anything, as it is the doorway to reconciliation with our Creator. Our response to which determines our eternal destination. From this perspective, sharing the gospel is even worth more than maintaining the status quo of an ancient untouched civilization. After all, eternity counts for more than our short time here on earth.

So my spirit burns inside. Burns to see saints that will follow Jesus whatever the cost.

When I go to heaven I want to meet Chau and shake his hand. And thank him for his sacrifice that reminds us all what following Jesus is really about.

Some quotes from Chau’s journal…

“Lord yet you will be close. If you want me to get actually shot or even killed with an arrow, then so be it.

“You guys might think I’m crazy in all this but I think it’s worth it to declare Jesus to these people.”

Trauma

Autism, Emotions, God, Joy, Mental health, Microcephaly, Parenting, Special Needs, Spiritual, Stress, , , ,

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.

Today Was A Happy Day

Autism, Emotions, Excited, Joy, Microcephaly, Special Needs, , , ,

We had Summer home this morning (Saturday). So the day before I prayed – how are we going to handle this? I got this idea – what will bring joy? That was a better question than how will we survive. I decided to take my girls out for coffee… well hot chocolates. And by girls, I mean my three girls – Kiara (15), Summer (11) and Sarah (9). This was a Jack family first.

Now there was strategy in this. I knew this idea needed expanding or it could easily go pear shaped. I decided it would including drawing… Kiara loves art, the girls love drawing, and hey I can join in too. And so we did it. We went to Gloria Jeans, sat at a tiny table, drank our hot chocolates and iced chocolates and did drawing. Summer and Sarah were very excited. And Kiara had the look on her face that said she was about to do something special, that was even more important than chocolate.

Summer and Sarah were enthusiastic and loud, but pretty reasonable. Summer only disturbed one other patron, by knocking loudly on the glass window and waving at the old lady sitting just on the other side. Apart from that she sat amazingly still. There was some issues with textas on paper, due to the size of the table. Not much room. (Mental note – place with bigger tables next time). But apart from that, and some issues with drink and room temperature, it was a truly lovely experience. The girls loved their chocolate drinks and were happy to share and try out each others.

We lasted 45 minutes, which was amazing for Summer and then she was off. Kiara directed – mum you follow Summer, I’ll look after Sarah. I was already off. And we were crossing the road on the pedestrian walk, where a car stopped for us. Summer decided to stop half way across and refuse to move. I urged her to move, I pointed at the car and said we were in the way. She started to walk toward the car. By this time Kiara and Sarah caught up and passed us. Eventually we crossed the road. She’s never done that before. You never know what to expect with Summer.

Then it was off in the car to drop Summer at the respite house for the weekend stay.  Sarah put the radio on and changed stations at Kiara’s request. Then turned up her favourite songs really loud. She sang loudly and bopped in her seat. Summer kept drawing on her paper and even didn’t complain about the music. We were all happy.

Then we got to the respite house. Summer didn’t want to go. We went in, Summer protesting. As usual, Summer stayed in the corridor. She wouldn’t come in. I tried to bait her with Kiara and then Sarah. In the end all three of us urged her in. We played together in the sensory room for about 5 minutes together. We had fun. But then we had to leave and it was heartbreaking. The staff distracted Summer with a treat and we escaped through the playground. I hate that, but otherwise she comes out the door and won’t leave the corridor. I wish we didn’t have to bring her here. It’s a great place and they care for her beautifully. But it’s not home. And she wants to be home. But we can’t cope with her home all day. I wish it was different.

We drove home, the three of us. Kiara wanted the radio again, but Sarah didn’t want music anymore. Nor me. I asked Sarah if she was sad about leaving Summer. She said yes. I think Sarah and I needed to process leaving Summer.

After lunch I took Josiah clothes shopping. He came out looking mighty fine. He’s ditching shorts and t-shirt and crocs for some style! His decision. Such handsomeness!

Kris made pizza for dinner. Yum. After dinner we sat in front of the fire and I read a chapter of Nanny Piggins. Lots of laughs, especially from me, Kiara and Josiah. Micah got annoyed because we laughed so hard and he didn’t know what it was about.

We ended the night watching the movie ‘Wonder’ for the second time this year. The last time we loved it, but there were a lot of interruptions as Summer had been home. This time we were going to see it properly. We LOVED it. Brilliant, brilliant movie! When the dog in the movie died, Sarah must have been clued into the subtle cues, as she went over to Rupert and started hugging and patting him. And Rupert wasn’t the only dog watching the movie. Micah had a few other friends as well.

I had a happy day overall. It was especially wonderful to have a positive morning with Summer, which included some of her siblings. If we can do this more often, then maybe we can have her home more.

 

Summer and the hole

Autism, Emotions, Exhaustion, Mental health, Microcephaly, Parenting, Special Needs, Stress, , , , , , , ,

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.