Category Archives: Microcephaly

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.

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 🙂

Trauma

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

Today Was A Happy Day

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

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

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

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

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

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

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

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

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

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

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

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

 

Summer and the hole

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

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

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

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

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

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

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

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

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

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

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

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

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

Four Glimpses of Possible

Anxiety, Autism, Emotions, Excited, Freedom, God, Grateful, Inspiration, Joy, Laughing, Love, Mental health, Microcephaly, Parenting, Peace, Special Needs, Spiritual, Stress, , , , ,

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

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

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

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

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

  1. Peace in my gut

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

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

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

So I determined to try.

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

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

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

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

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

  1. Love overflowing without any striving

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

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

  1. Absence of pride

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

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

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

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

  1. Body and mind vitality

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

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

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

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

I decided I would like to continue eating like this.

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

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

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

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

Conclusion

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

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

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

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

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

And then wait until I become the love lady.

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

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

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

Love to all

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)

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.

Ow My Head

The laughs: The girls make us laugh a lot. Summer did a good job tonight after an unexpected bump to Sarah. And watching this video back, they did a lot more laughing again.

The food: Summer and Sarah helped themselves to ‘Frozen’ rice bubbles after dinner. I was happy for them that they initiated and completed the task themselves. No matter they weren’t at the table. I’ve learned to be flexible with these two, especially Summer. Table is ideal. Loungeroom is not allowed. Elsewhere we can work with, if it means a good mood and food is eaten.

Dinner time we aim to have all seated. Sometimes we let Summer eat later. Sometimes we insist she sit with us or give her the alternative of bedtime. Then she chooses dinner. It can be hard work getting her to sit with us for the whole of dinner. Sometimes we just want to relax and focus on the other kids. Other times we just want the whole family to be together. So life and decisions ebb and flow. It’s been a long journey of learning the hard way, learning to be flexible.

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.

All Five Kids Having Fun

Well this was an unexpected surprise. After dinner Kiara, Josiah and Micah decided to play a card and dice game – ‘Last Chance’. They went upstairs so they wouldn’t be interrupted. Well someone called ‘mum’ didn’t lock the door to upstairs, so guess what – Summer and Sarah opened it and went upstairs. I heard it happening while I was lounging on our giant bean bag. I waited for it – mum, mum, mum!!! OK. I reluctantly got up and went upstairs preparing to use all of my skills to cajole the girls, or Summer at least downstairs. Easier said than done! They did NOT want to move. But they were sitting there quite calmly so I suggested I lie on the couch next to them and keep an eye, and see how they went. The other kids reluctantly agreed. Well, surprise, surprise, it continued to go well. I thought that was amazing. I kept waiting for Summer to grab the dice and everything and then for the conflict to erupt, but she and Sarah just sat so nicely for ages. She did get the dice a few times, but fairly quickly gave it back, especially when I announced to everyone how good Summer was being. Kristin came upstairs and I told him to take a look. He suggested I video. So here’s a snapshot…

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!