Tag Archives: autism

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! 😊

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.

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!

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…

Tithing is Fun

Autism, Bible, Church, Freedom, God, Joy, Microcephaly, Out of the box, Parenting, Special Needs, , ,

Tithe party me M SI love paying tithes! You can probably guess two of my reasons. But the third might be a bit of a shock…

(For those who don’t know what tithing is – it is setting aside 10% of one’s income for God).

  1. I love God and want to put him first in every area of my life. It would be miserable to hold the area of finances back. I would feel like I wasn’t trusting God or honouring him. He’s so precious it is a joy to put him first. And tithing is a tangible way to express that. One that costs. One that is a sacrifice.
  1. I like giving tithes to the church because it is my local spiritual home. So I help pay the bills. There’s a sense of honour and rightness in this. A sense of being an adult and taking responsibility. I like being this kind of person.
  1. He he he this is the funny one. I also use tithes to have a party! Now I need to establish some context here…

One of my passions is to know God’s ways and walk in them. I read the Bible with eyes that seek to discern his ways and his heart, even if it seems to contradict the traditions I have been taught. Some times I spot things in the Bible that seem controversial because of the cultural or religious parameters I currently experience. I meditate on such Scriptures, trying to discern the difference between God’s thinking and ours, and what needs to change. Even Old Testament passages on laws that no longer apply in New Testament times, give me insight into how God thinks, what he values and what works.

Well I found a passage on tithing that really got me thinking. Have a squiz…

Deuteronomy 14:22-28:

“Be sure to set aside a tenth of all that your fields produce each year. Eat the tithe of your grain, new wine and olive oil, and the firstborn of your herds and flocks in the presence of the Lord your God at the place he will choose as a dwelling for his Name, so that you may learn to revere the Lord your God always.  But if that place is too distant and you have been blessed by the Lord your God and cannot carry your tithe (because the place where the Lord will choose to put his Name is so far away), then exchange your tithe for silver, and take the silver with you and go to the place the Lord your God will choose.  Use the silver to buy whatever you like: cattle, sheep, wine or other fermented drink, or anything you wish. Then you and your household shall eat there in the presence of the Lord your God and rejoice.  And do not neglect the Levites living in your towns, for they have no allotment or inheritance of their own.

At the end of every three years, bring all the tithes of that year’s produce and store it in your towns, so that the Levites (who have no allotment or inheritance of their own) and the foreigners, the fatherless and the widows who live in your towns may come and eat and be satisfied, and so that the Lord your God may bless you in all the work of your hands.”

I have to admit. This one baffled me, as I’ve never heard it taught before. I’d only ever heard of people paying tithes to the church, or some people would give tithes to charities or missionaries. But here in Scripture the people were instructed to eat their tithes, to have a party, a celebration. And no small celebration at that. A whole year’s worth of tithes!!! And they all did this it seems at the same place and at the same time. What a ginormous incredible lavish celebration this would have been! But God didn’t want to leave out the religious leaders (Levites) – they got to celebrate too. And of course every third year, the tithe went to providing for the religious leaders and the needy.

But the primary purpose of the tithe seemed to be for feasting and rejoicing in God’s presence, with the whole community, to teach them to revere the Lord always.

How incredibly exciting. A party of epic proportions. Wow!!!

This was doing my head in. I was thinking. What does this say about God? What was he aiming to achieve in this, that can teach us practical wisdom for now? What benefits are we missing out on by not doing this today? Here is my thought journey…

  1. Shock! Imagine spending the tithes on yourself. Is that allowed? It feels sacrilegious. But it’s in the Bible (God’s idea).
  2. Shock! Imagine spending the tithes on food and drink which won’t last. Here today, gone tomorrow. Is that wise use of funds? Wasteful? But it’s in the Bible (God’s idea).
  3. Shock! But then the church wouldn’t get enough money. They need money to operate. I share in this responsibility. (Yes! God covered this every third year, it’s included. More on my personal response later).
  4. What’s God trying to achieve? What would be the benefits of doing this?
    • God is put first, he’s the focus, he’s revered, he’s obeyed (same as for current tithing).
    • Celebration and rejoicing is extremely important for the health of a community, and even the mental health of individuals.
    • The lavish, generous spread of food and drink speaks of a lavish and generous of God. We participate in his nature. (I think it will be like this in heaven).
    • It shows other nations how blessed God’s people are, that they can celebrate in such happy and lavish fashion.
    • It gives children a really positive view of God as generous, as provider, as someone to be excited about. Parties and food and excitement speak volumes to kids.
    • Being a follower of God is not seen as boring. Followers are not seen as dry or stingy.
    • It sets an example of generosity and freedom and celebration. It builds these things into the culture.
  5. I honestly felt the Holy Spirits’ excitement when exploring this. I felt his joy and his delight in my awakening and his desire for me and my family to experience this.

But… my heart is also to share financial responsibility for my local church home, as expressed in point number one at the top. I value this and consider it very important and necessary.

So I talked with my husband and we decided to continue our current level of tithing to our local church. And any additional income we received, we would put aside a tithe for an annual celebration before God. Again I really felt the Holy Spirit’s pleasure and excitement for this.

So last November, our family of seven had its first tithe celebration. Now this was an event!­­ We have never taken the whole family out to a restaurant before. One, it’s too hard with our middle child who has microcephaly and autism. And two, I hate wasting money, especially as we’re not loaded. My husband and I rarely go to restaurants for this reason, so I couldn’t fathom paying not only for the two of us, but then pay for five kids as well!!! Yes, I know – stingy mentality!

So this was a Jack family first!!! And we had to find a way to make it work for our special needs daughter, or it would be a disaster. With this in mind we chose an international all you can eat buffet restaurant. This was not only perfect for lavish celebration – food everywhere and as much as you want. But it was also conducive for our middle child Summer – she could wander around and be a yo-yo at the table, and it wouldn’t matter. I invited the Oma too, so she could look out for Summer so we could all relax.

I’m telling you, the kids were beside themselves with excitement. When I first told them what we were going to do, they were counting down, they were telling their friends. They couldn’t wait. And I read the Scripture, I told them we were celebrating before God, that we were so grateful for his provision. Wow. Look how much God has blessed us, that we can have this lavish feast!!!

We were all agog at the table when we sat down to lunch. We said grace and then we went for it! I was going to advise the kids to have savoury first, but then I thought – what the heck – let the kids have whatever they want and as much as they want. Well, little five year old Micah went straight for the marshmallows and lollies. He awed at the chocolate fondue fountain. The dessert bar got lots of visits from him and the older two. Summer and Sarah, our two special needs girls were very happy too, but perhaps a little overwhelmed. They ate a bit, but needed helping. Summer went wandering around the Christmas tree that was up already one month before Christmas. She did laps. But nobody minded.

We had such joy! And there was no stress about the bill!! Hahahahahahahahahaha! Oh the joy!

I’m telling you. I was so grateful to God for this experience. I’m crying as I’m writing. I felt such freedom and joy and marvel at how amazing, big, out of this world God is.

The kids have been asking when the next celebration is. They want it twice a year. I’ve put it in the diary as an annual event. They have to wait. Next time I want to make a week of it! Glory to God!!!

Tithe party Kiara Sarah
Beautiful Kiara and Sarah enjoying the celebration!

 

Tithe party Josiah Kristin
Josiah and my hunky husband, Kristin!

Tithe party Summer Oma
The Oma and little Miss Summer!

 

 

Mighty Micah and the cheese bread

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…