Category Archives: Exhaustion

My Current Reality of Seizure Watching

Autism, Exhaustion, God, Joy, Microcephaly, Parenting, Peace, Special Needs, Spiritual, Stress, , , ,

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.

The Power of Non-Judgmental Thinking in Daily Living

Bible, Emotions, Exhaustion, Freedom, God, Inspiration, Joy, Mental health, Peace, Spiritual, Stress, , , ,
Photo by Wesley Tingey on Unsplash

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

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 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.

The Extremes of Summer (my daughter)

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

img_1138I love this girl to bits. I’m proud of her. But today was hard. Actually it was awesome and then it was really hard. I’m going to debrief here on my blog…

  • It was a good start to the day.
  • I slept in until 8:00. Nice. Everyone was quiet. Summer didn’t climb out the window this morning. We now have a new window winder that can’t open enough for her to climb out, but opens enough to air out the pooey nappy smell. We need that window!
  • Summer drank her medication without shaking it around her bedroom onto the wall and blanket.
  • Summer ate all her porridge in her bed, without needing cajoling. She eats better on her own in her bed, than out in the dining room amidst the noise and movement of siblings, which set her off. She also ate without flicking any porridge. No clean up. Only a leaked nappy and had to change half the bed.
  • The smell in the room of pooey nappy was awful. Much worse for a nearly ten year old, than for a baby. I took her to the bathroom to get dressed. I shepherded her like a sheep dog, to make sure she went straight to the bathroom, without suddenly bolting toward the rest of the house. If that happens, then dressing her and doing her hair become problematic. There’s no bargaining power, as she’s free. If she’s in her room and she doesn’t want to co-operate, I can say goodbye, lock the door and come back later.
  • Once all ready she joined her siblings and Rupert in the rest of the house for five minutes, before getting in the car. All fine. No dramas. Only five minutes of risk time.
  • The 20 minute car drive was great. She hugged Rupert the whole way and insisted that I hug and kiss him at various points. Rupert earns his keep every day I tell you!!! She was happy and repeated various sentences over and over. I’m used to it. It hardly bothered me. She’s gorgeous.
  • I dropped her and Sarah to a special needs program from 10-3. Blessing! Yay! She saw a friend and enthusiastically greeted her with hug and kiss and ‘my friend’. Warmed the heart.
  • She bolted inside for the out of bounds music room. The other child followed her, much to the grandmother’s chagrin. It took time, effort, skill and patience to get her out. To move her from one side to the other, to remove the guitar from her, to get her away from other instruments, to shepherd her away from the sight of other distractions. Made it. Bye. Have a nice day!
  • Micah and I went to a local park with Rupert. It was a glorious day. The park was BEAUTIFUL. Lots of lovely trees. Blue sky. Gorgeous gorgeous gorgeous. We stayed longer than I planned. I was so happy. Kris called to say he was taking Kiara and Josiah with him to help him with soup kitchen preparations. I relaxed even more.
  • Micah and I went home for lunch, I had a rest on the bed, we did part of a jigsaw, we tried some sugar free desserts I had made, I rested some more. Micah and I were singing to ourselves.
  • I took the iPads in the car as ammo to pick the girls up.
  • They had had a great day, as usual at the program.
  • Before leaving, Summer wouldn’t go to the toilet. She took her top off. I got her top back on when she realised she was cold. I’m glad she’s not a teenager. I kept trying to steer her to the toilet, but she kept trying to escape past me. I tried to block her escape and cajole her. To no avail. Some screaming, some initial aggression. It was a no win situation. I let her go. Whilst trying to walk out, she saw a guy opening a storage area. I said ‘oh no’ while Summer bolted for the opening. A staff member and I spent time coaxing Summer out. He helped bring her to the car, while I walked in front with eyes in the back of my head watching every movement, ready to dart and block.
  • She had her top off again. She didn’t want the helper to put it on, so she froze and wouldn’t get in the car. I realised she wanted mummy to do it, so after getting Sarah and Micah in, I leaned over and put her top on. Then she got in. Then the iPads were on. Peaceful car trip.
  • Once home we tried toileting again. Summer ran for upstairs as the door was mistakenly open, so I went with the flow and steered her with some resistance to the toilet. She was agitated. I was nervous the iPad might end up in the toilet. She relaxed though and complied. She actually did a poo in the toilet. That is actually big news! Been working on that for four years. While she was sitting, I went downstairs, got Sarah and put her on the downstairs toilet, working through some resistance also.
  • The girls stayed on iPads for a while. Summer was naughty at some point. I can’t remember what she did, but I put her in time out. I think she was lashing out at someone. It’s hard to get her in her room for time out. She’s strong and I can’t carry her anymore. I have to hold her wrists and move her quickly and hope the momentum and speed will distract her from resisting. I need her to walk with me. If she resists, she drops to the ground and becomes a dead weight. She can then scream and kick anyone near her. If I’m overwhelmed with what is going on and the needs of other kids, I can’t just leave her there, or she will start damaging things. So I grab her by the wrists, so she can’t scratch me, and drag her by the bum along the floor to her room. I try to do this in a way that is not going to hurt her. This is my last option, when all else fails. When she’s in her room, I lock the door and we both have space. When I come back she is happy, she says sorry and all is well again. We both need the space. It helps us survive. I realise this paragraph may sound very shocking to normal mums and dads. This is not normal. Summer’s brain condition is not normal, her behaviour is not normal. Normal parenting doesn’t cut it. We do what works. We love her to bits. But we have to protect her, I have to protect myself and I have to protect the rest of the kids.
  • For some reason, she ended up in time out a second time. That’s unusual. We don’t use time out that often anymore, only when she really won’t settle and is causing disturbance that is escalating. I checked on her and smelt a poo. I went to get the wipes, etc. And did something else and got distracted. I forgot about her. Later when looking for her I realised she was still in her room. She had taken her pull-up off and the poo had fallen in a pile on the floor. Then I saw the walls. Smeared poo in many different places. She has never done this before. On the rug too. And a little on the bed mattress. I wasn’t feeling my best at this point. I took her straight to the shower, while she resisted. I was worried she had poo hands and didn’t want her spreading the mess. I was being bossy in tone, and hoped she would submit as she can often do, when realising she has done something she shouldn’t have. She resisted the shower but I got her in there anyway and attempted to shut the door. She objected and tried to get out. I wouldn’t let her. She started grabbing things in the shower and throwing them. She started playing with the taps. I left the room, hoping she would settle if I wasn’t there. She came out. I took her back in. She threw more things. I shut the door. I needed time to clean the room. I needed to contain Summer somewhere so she wasn’t wet and naked and pooey in some other place in the house. She came into the bedroom wet and helped me clean the poo. Rupert had already eaten what was on the floor. I warned the kids not to let him lick them. It took quite a while to clean the wall. Summer was more cooperative.
  • I spoon fed Summer her dinner while she was on the iPad. This is the least problematic way to feed her. I don’t like it. I want her to join the family. Sometimes we insist on it, but it usually involves considerable stress for her and the whole family. Problems include – getting her to the table, getting her to stay at the table, stopping her kicking the nearest child, enduring screams if she initially rejects the food, risking food being pushed away and something thrown, risking verbal stoushes with siblings that can escalate very quickly, her refusing to eat, then wanting something, then refusing, then wanting, then wanting a different utensil, etc. The easiest times are when there are visitors for dinner. Then she can often sit and behave quite nicely.
  • I don’t think I was as patient with Summer today as I can be. I had such a lovely relaxed day with Micah, that encountering her challenging behaviour was more of a shock and I often find it harder to deal with when I’ve just had a break. Summer responds best to immense patience, a sense of humour and eyes of love. She’s a connector. That being said, she also responds well to a firm hand – and a bossy voice can sometimes get her moving, when nothing else will. It’s a fine line all the time. I have to have a hundred strategies and pull them out at different times, hoping for the best. I try one, it doesn’t work, I try the next, it doesn’t work. I feel like I am doing a special needs parenting dance. It’s stressful. It’s unpredictable.

I’m Not Ideal

Emotions, Exhaustion, Freedom, God, Inspiration, Mental health, Peace, Spiritual, , , , , , , ,

A+I’ve been a chaser of the ideal. A lover of perfection. But I have discovered multiple times that I am considerably lacking in ideal. Haha it’s so funny. And I keep forgetting this lesson which is even funnier. And tiring!

Fortunately for me, God is ideal. Well – in His book, maybe not ours. (He’s out of the box!)

I remember the first big lesson was in the year 2000. I had finished my music and teaching degree and was in my first year of teaching full-time, secondary music and psychology. It must have been in the second half of the year, as I was tired. I was feeling worn down. It was a full-on year getting used to full-time work, but what was worse, was I was frustrated with my growth as a Christian.

I was always passionate about growing in God. As a teenager I used to have charts to tick off my Bible reading, Bible memorisation and time spend with God (TWG for short). I would set goals and pursue them for a few days or a week, then I would get distracted or lack the will and give up. Then I’d feel guilty and bad and horrible and far from God and miserable. Then after a few months, I’d connect with God wonderfully, have a big cry and write letters to my future self about how awesome it was to be in His presence, and how I needed to press through in future and not give up.

But in the future I would keep not pressing in. I would get bored. I would get tired. Then the guilt, etc, etc. Cycle after cycle.

By the year 2000 I had done this cycle lots and lots of times. And I was tired. I felt like a failure. I tried so hard but couldn’t win. Aaarrggh!!!!

Well I sat down in my loungeroom in Boronia and I decided to quit. I decided to tell God that I wasn’t giving up on him, but I was giving up on trying to grow myself, because it wasn’t working. I told God that he had to grow me, as I was giving up.

Hahahahaha. I think that’s what God was WAITING FOR!!!! He must have been shouting HALLELUJAH!

Well, later that week, a light came on in my soul. I had felt dead for a long time, so I noticed the difference. I didn’t put the light on, it just came there, and I knew God had done it in answer to my prayer. Then he put an idea in my heart to connect with a fellow teacher at the school, to ask her to mentor me in prayer. So I did what I was told, and that was great. My life started to build.

And time and time again, I watched God take the initiative. He would put something on my mind or heart and I would hear and just do it. And then life would come, then growth would come. And it was SO much easier. He led me to breakthroughs and overcoming and winning. Well not everything all at once, unfortunately for my poor impatience. But fortunately for my patience, he did things at his pace, some slow, some fast. His choice, his timing.

I learnt (and am still learning) to not worry about my imperfections, as I knew God would take care of it eventually. There was no point on me improving myself in that area, until God decided it was time to work on it. Cos then there would be grace. I learnt to trust the Holy Spirit that he knows the right timing. He’s the master craftsmen. He knows what to do and when. So delicate an operation sometimes. He’s seriously brilliant. I have watched him over and over in amazement!

I do pray and ask God’s intervention in stuff. I don’t just sit back and stare. But then I trust (or I need to trust) that he’s heard and will tackle it when he sees best. Often he does a little bit of tackling some time within that week, I think just to encourage me and let me know he’s onto it. And the more I press in with prayer, the more active he gets. So it’s definitely two way street. But without him, I may as well pick up my bat and ball and go home. Cos there will be no winning, no real life change, just a little rat going around and around the improvement wheel and getting tired!

My Happy Place

Anxiety, Autism, Emotions, Exhaustion, Freedom, God, Inspiration, Joy, Mental health, Microcephaly, Peace, Special Needs, , , , , , , , ,

Rest chairThe stress and exhaustion got to the point, where wise advice from someone really close, was to put our middle child Summer in a home for six months, so that my husband and I could recover and focus on the other children. Summer has microcephaly, a moderate intellectual disability and autism. Challenging behaviour has been part of the package.

Anxiety medication for our daughter was always a last resort, and so we thought this would be the time to try it. Better than giving her up for six months.

But another dear lady, in a two hour soul emergency phone call, urged me to rest in Jesus. She also had had an adrenal crash one year prior, and had gone deep with Jesus. I caught the vision.

I spent three days with my primary focus as sitting in my super comfy lounge recliner. Resting in Jesus. I knew I had to do this. Even if the medication helped Summer, I was too wrecked to even look after five normal kids, let alone two with special needs. I needed a personal breakthrough.

I sat in my super comfy chair and I didn’t want to get up.

OK I have to do this quick aside… It’s about the chair… In the week prior, I was watching a Facebook page where local people sell stuff, often cheap and occasionally for free. Well there was a 3 seater couch and 2 recliners up for sale. $500 cos it needed to go the next day. Originally bought for $4000. I really wanted it, to replace our uncomfortable stained 3 seater and 2 one seaters, but hey – $500 wasn’t growing on trees in our place. But then the next morning, the guy put ‘free to a good home’, cos he had to empty his place that day as he was moving. Well I was the first person to respond and boy did I write SOLD. My husband picked them up with the guys help that afternoon. And I tell you the whole thing was immaculate and the most comfortable lounge suite I have ever sat on in my life!

I can’t tell you how excited and pleased and thrilled and totally hap-hap-happy I was! Joy spilling all over. I sat in that recliner chair and I did NOT want to get up!

So… fast forward to resting in Jesus. God set me up to want to stay in that chair. So stay I did. And I sat there and thought about praying. But then I thought – no – I have to rest. Praying is work. Good work, but that’s not my job at the moment. And I didn’t want to just rest. I’ve done that a lot in the past 11 months trying to recover from the adrenal crash. I needed to rest in Jesus. How do I do that?

So I laid back in the recliner and with a sigh of relief, rested my inner being, as if I was just leaning right into Jesus. God must have given me grace to do this, because as I took on an inner posture of relief and relaxing into Jesus, I started to laugh, which made me cry. And then I laughed and cried out loud for ages. Friends of mine call this craughing! Love that word! When I stopped laughing, I would redo the relaxing in Jesus posture and it would set me off again.

When I thought to pray, it wasn’t restful, so then I would just relax into Jesus again. He became my place of rest, my place of safety and no striving and absolute freedom. No judgment, no stress, no weights. I can’t help crying writing this. It was absolutely wonderful. And my gut started to feel peaceful and rested. I don’t remember ever feeling my gut being rested. It always felt uptight. I would tell the psychologist that I’ve been seeing, since my crash last year, that I could feel constant uptightness in my gut. It wasn’t relaxing, but just a present reality that I didn’t know how to get rid of.

So then I felt immensely grateful and relieved to have this new feeling of rest deep within my gut. The best way to describe it was like having rivers of living water flowing within me. I laughed, because this is in the Bible (John 7:38). But I’d never experienced it quite like this.

Then on the third day of resting in Jesus, I hadn’t started Summer on the medication yet and I didn’t have carers helping me that afternoon or my husband. So I was bracing myself for having the five kids on my own, after a very tough prior weekend with Summer. I remember the kids all coming in the door after school and milling around. I was expecting them to bubble manically around me, but as soon as they came near, it was like they bounced into my peace and dissolved. They were calm. I watched their energy diffuse without me saying a word. The whole afternoon and evening was so much easier. I was OK. I was peaceful. I can’t tell you how good that was.

The next day I didn’t want to start Summer on the medication cos I wanted to see if this new inner peace impact could continue. My friend cautioned me not to use up all my new God energy on Summer. She wanted me to recover quicker. The next morning I woke up with clarity. I thought God will get the glory in the end. We can tackle this from a multi-faceted way. I started her on the medication, which we were told would have no positive impact until two weeks after starting. Summer has been consistently calmer for five weeks now, starting from two days before we started the medication.

Since then my peace and rest has been up and down, as I spend less time resting in Jesus. I can’t stay in the chair all day, as I have stuff that needs doing. So I am practicing negotiating the balance between resting in Jesus and also living life. I want to grow in this rest. God showed me what is possible with extra grace in those first three days and now I want to grow in this and practice it. I believe the medication is helping Summer continue this calm, while I am still practicing and it is helping her personally wherever she is.

I love how God shows me what is possible and then helps me journey to grow into it!