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Lockdown 4.0

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

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’s Birthday Surprise

Watch the first video for the birthday surprise. Then there’s another videos below showing the present being put to good use. These girls crack me up! See if you can guess the song!

(Another memorable moment today was when the girls camp upstairs mid afternoon with chocolate all over their face and hands. Summer was proudly holding her birthday cake with part of the top eaten out. Needless to say older sister Kiara put her decorating skills to good use after dinner, topping the rest of the cake with cream, strawberries and blueberries!)

 

 

The Extremes of Summer (my daughter)

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.