Tag Archives: special needs

Lockdown 4.0

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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 🙂

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.

Summer’s Doggy Heaven

Anxiety, Emotions, Grateful, Joy, Mental health, Special Needs, , , , , ,

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

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

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

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

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

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

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

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

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

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

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

We are SO blessed!

Outings With Summer – Note To Self

Autism, Emotions, Joy, Laughing, Love, Microcephaly, Parenting, Special Needs, , , , , ,

summer-shopping-bear-2

  1. Have fun. Every aberration to the social norm is an exciting and stimulating experience.
  2. When shopping, keep the ‘to do’ list short.
  3. Make the primary goal joy, not ticking boxes.
  4. Develop an appreciation for looking at random details for a prolonged time, e.g. the colour of a sign.
  5. Look ahead for ride on toys in shopping centres. Turn around and walk in the opposite direction, unless time is no issue. Then bring a book!!
  6. Look ahead for dogs and babies. Steer Summer away from visual access, unless time is no issue and the other person is relaxed and friendly.
  7. Appreciate the kindness of strangers.
  8. Wear loose clothing around the waist so that people don’t have to see my tummy jiggling when I am in stitches at Summer’s delightful public interactions.
  9. Avoid going out if there’s time pressure.
  10. Be very patient.
  11. DO NOT let Summer see others eating food!!
  12. Bring BETTER food!
  13. Before going to McDonalds, call them and ask them to put a barrier in front of the food preparation area.
  14. Before going to the bank, call them and ask them to put a barrier between public access and private access areas.
  15. Maybe bank online.
  16. Before going to the chemist, call them and ask them to put a barrier in front of the staff only area.
  17. Wear good running shoes.
  18. Keep lollies on hand. They reduce stress. Bribery is the key word here folks!
  19. Don’t make eye contact with other people if Summer becomes agitated.
  20. Believe that everyone is understanding.
  21. Smile lots, apologise quickly if needed, leave.
  22. When outside, look ahead for puddles. Block Summer’s view of the puddle.
  23. Bring spare shoes and socks.
  24. Remind yourself it’s good for Summer to experience the community and it’s good for the community to experience Summer.
  25. Watch Summer and learn from her. Love, innocence, joy, wonder, enthusiasm, excitement.

Chocolate Faces

Autism, Microcephaly, Parenting, Special Needs, ,

Summer and Sarah chocolate facesWe have some great carers that help us with our girls!! Jenny does cooking with the girls  once or twice a week and today I’m pretty sure they made something with chocolate in it. Hoping some of it made it to the oven for us to eat later! 🙂

We have a range of carers on different days, to help with getting the girls ready in the morning and after school. Mary comes six mornings a week plus one afternoon plus is employed by our church. Truly a legend. Not all carers have worked out – it’s not an easy job – not for everyone. Knowing this makes us appreciate the support all the more. And especially we appreciate their love and care for the girls and the family. Their help makes a massive difference!

Microcephaly Musings

Autism, Microcephaly, Parenting, Special Needs, , , ,

Summer, Sarah and companion dog Rupert!

My husband and I have five children, two with microcephaly (both girls).

I’m finding myself grateful today that one of the girls is partially toilet trained. At seven years of age, that’s definitely behind the average, but she’s still ahead of her nine year old sister. The reason I’m glad is because she really knows how to do number two. I’m telling you that it’s a myth that we all poo once a day. No siree. It can be many, many times. And it’s not fun cleaning that up for a seven or nine year old. My close friend said to me one day after cleaning an accident that she will never ever complain about having to change kitty litter ever again. I’m telling you – I am a blessing to my friends!

You get to learn lots of patience in our household. I get to practice saying the same instructions, not just once or twice but over and over again. ‘Let’s put your shoes on. C’mon Summer time to put your shoes on. Look, here are your shoes. Look – pink shoes. Shoes make your feet warm. Let’s put your shoes on. We need shoes to keep our feet safe. Shoes on. C’mon. Shoes. Shoes. Shoes on.’ And I get to hear responses over and over again. It’s fun to hear how a toy is blue. Blue. Blue. (Yes, it’s blue). Blue. Blue. (Yes, blue). Blue. Blue. We get plenty of time to learn things and practice things, especially patience. Then it’s even more fun when the five year old starts complaining about the repetition and having a meltdown, which causes the nine year old to have a meltdown, which involves a punch to the seven year old, which sets her off too. Then the eleven year old yells at them to quiet down, which helps SO much. And thankfully the thirteen year old is in her room reading. Meanwhile mum is wearing headphones which helps her stay in happy land a little longer.

My friends laugh at me for my ‘calm’ voice. I hold it together, keeping the atmosphere smooth, ‘Summer, it’s breakfast time. That’s OK you don’t have to have porridge. You want yoghurt, sure. Here’s your yoghurt. You don’t want it. No problem. Don’t push it. Gentle with the plate. It’s OK. You’re a blessing Summer. Mummy loves you.’ It’s all calm, no pushing angry buttons here. I’ve learnt from experience. Until the eleven year old whinges and I’m like, ‘Be quiet’ (yelling). All in a split second, the façade drops. And then it’s (calmly) – ‘Summer you want yoghurt now. Good girl. Lovely eating. You don’t want it now. That’s OK. Don’t feed the dog. Sit down.’

I think our household would make excellent reality TV show viewing. Parents could all feel better about themselves and better about their challenges.

In the early days I read that kids with microcephaly are often very smiley and affectionate. Tick tick for our girls. Summer is so expressive with her love. She looks you in the eyes, she says ‘I love you mummy’ and sits on your lap and cuddles for ages. She strokes my head or my back. When I cry she wipes my tears and I get ministered to from her hugs. She has a gift that I can’t really comprehend, but I have been emotionally filled up on many occasions. Others have said the same. Once my husband took her to the supermarket and she saw a homeless man outside. She went up to him and gave him a hug. The man looked a little uncertain, but my husband nodded OK. Later after doing the shopping, she saw the man again and smiled. The man thanked my husband profusely saying it was such a long time since he had been hugged by a child. So innocent. So beautiful. I’m amazed at the gift she is.

Sarah is just such a sweety. I feel like I’m holding a rose and breathing in a beautiful fragrance. She giggles and smiles constantly. She’s naughty too and finds it funny. I’m not sure if developmentally she really understands yet. I can get so frustrated but she just smiles and giggles and says ha-ha in that annoying sing song fashion. She picked that up somewhere and hasn’t let it go. She’s more shy than Summer, but she’s got no problems with volume. Being the number four child, I think she learnt to shout instead of speak.

That’s enough musings for today. More another time…