Monthly Archives: December 2016
Summer’s Doggy Heaven
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!
Special Needs Siblings – What Do They Really Think?
Today I got asked to collect some responses from three of our kids (Kiara – nearly 14, Josiah age 12, Micah age 6), regarding life with Summer (and I included Sarah too). There was the expected negative response at the start and also some precious gem statements later. Here’s the unedited version…
Question: What is it like having Summer & Sarah (S&S) away?
K – relaxing, more peaceful
J – don’t have to worry about leaving stuff out
M – don’t have to worry about locking doors
J – can use technology, cos they won’t pester
K – can play proper games with mum and dad
M – can play all the games that S&S won’t understand
K – don’t have to hibernate in bedroom
M – more relaxing, more fun
K – more attention from parents
Question: What is it like having Summer & Sarah here?
K – Parents say, ‘Get out of the way, the girls are here’. Parents are more busy. Lots of screaming. Have to be careful with what you do. If you bring out food, it will distract their routine. If they’re annoyed, you have to get out of their way
J – Less attention from parents who are focused on S&S
Question: How do you feel about all this?
M – Feel great when S&S not here
K – When S&S are home, either annoyed/angry, but it can also be fun. More relaxing when S&S not here, but not the excitement. “It can go both ways”
J – I like it when S&S not here. But also like playing with them, it’s nice. Annoying with screaming, shouting, poking tongue out. “I go to my room, read, play with lego, to relax, when they do this”
M – they scream at you for nothing
J – boring when S&S not here (& other siblings away too). Likes spending time with them too.
K – “When they’re away it’s like there’s an empty space. When they’re here there’s a warm feeling”
M – when they’re away, you can steal stuff from their room which is actually yours
J – When they come back it’s nice listening to their laugh. Their happiness is contagious. Everyone can have nice feeling.
M – When S&S here, feel great. But when they scream/shout/cry I feel horrible
K – Stressful
M – And you get more smacks cos when they’re here, you whinge more, cos you’re upset with them
Question: Does anything need to change?
All – stop S&S screaming, Sarah quieten down. Inside voices
K – We need more weekends without them. More ‘us’ time, with just the 5 (2 parents, K, J & M). More outings for just them so we get a break. Also more outings as a whole family. Also more outings for just the 5 of us.
M – no more whinging
K – S&S don’t get in trouble. We get all the punishments. (I asked, is that true? K said – some of the time)
K – They need to learn to share
J – They need to learn not to go on my iPad
M – learn not to do naughty stuff
Your Sixth Sense (Better Than Sex)
You have an amazing hidden ability. You might not be aware of this yet, but you have a sixth sense. What is it? Are you using it? Have you thought about its possibilities?
Your sixth sense is the ability to sense the atmosphere…
on TWO levels…
the emotional atmosphere and the spiritual atmosphere (better than sex, more later).
Everybody has this ability. But not everybody pays attention to it. And it is attention that hones your ability.
The Emotional Atmosphere
Have you ever walked into a room and immediately noticed tension? You don’t know what happened, but you know something is really off! Perhaps there was a heated argument. Perhaps the people in the room are just seething with unspoken anger. It feels very different to walking into a room where people are happy or excited!
Part of our mood awareness comes from visual cues, such as the expression on people’s faces and their body posture. But our perception goes beyond this. I put it to you, that even with a blindfold on, many of you would still sense mood, if the emotions were pronounced enough.
Some people are better atmosphere perceivers than others. That comes down to natural ability and how much you have developed the skill. That’s like anything in life. Some people are naturally very gifted at music, for example, but everyone can still develop a degree of skill, and hone it with practice.
For some of you, the ability to sense the emotional atmosphere may be virtually non-existent. Perhaps you grew up in a household where this wasn’t valued or acknowledged, so you never paid attention to what you were sensing. Perhaps you disregard your perceptions, as they are subjective, they cannot be measured scientifically like vision or hearing, etc.
I agree that our sixth sense is subjective. Accuracy in diagnosing emotional mood isn’t always precise – but with practice and skill, reliability can increase. This sense shouldn’t be discounted – it should be cultivated and respectfully judged. It has enormous usefulness in both one-on-one interactions and groups environments, on a personal level, work level and societal level.
So far, what I have described is a common experience for many. But there is another level of atmosphere sensing that is completely different. It is SPIRITUAL. The difference is not understood until it is experienced, like trying to imagine colour, when you see in black and white.
Let me share my experience…
Sensing Spiritual Atmosphere
Our church has a lively worship time in the service. A band and songs, like those sung by Hillsong. This creates a certain atmosphere which is awesome. But this is NOT what I’m talking about. I can sing along, I can dance, I can lift my hands and enjoy the atmosphere. But again, this is NOT what I’m talking about.
Sometimes during the worship time, all of a sudden, sometimes unexpectedly, I sense the presence of God. THIS is what I’m talking about!!!
How do I describe this?
It’s weighty.
It’s like a charged atmosphere, except that it contains LIFE.
And this is a big difference. Let me repeat – it has LIFE. This life is the presence of a being… a person… of God himself.
In this moment I can experience a lot of emotions – awe, a sense of being washed over, of being cleansed, an awareness of the goodness and purity of God. I don’t want to be anywhere else. I never want the moment to end. I cling to God in this moment. I revel in who he is. I partake of him. Sometimes I erupt in laughter, sometimes in crying, sometimes a mixture of both. I feel like rivers of living water are flowing in my being. This is glorious peoples. Nothing can compare to this.
And oh to worship him. To lift him up. With every part of my being in complete agreement. There is a rightness. A peace. An inner YES that screams out and becomes louder than any negativity or cloud. It is my place of rest. I’ve found my tribe. I’ve found my home.
And other people who’ve experienced God say the same thing. I hear their description and I go YEP – you’ve met the Father! You’ve met Jesus.
And I don’t just experience this at church. When I connect with God at home… anywhere… the more time I spend with him, the more I experience his presence. It doesn’t happen all the time, but over the years, as I have been pursuing God more, this has been increasing.
Please excuse me for this next comparison, but I want to emphasise how awesome experiencing God is. It is better than sex. It is better than great sex. It is better than ultimate fulfilment sex. Sex brings physical pleasure and the ecstasy of emotionally blurring with another, going to a heightened state of being. It is amazing. But being in the presence of God is more amazing and more fulfilling.
Experiencing a taste of who God is and his life, is what our whole being longs for. We understand our sex drive and the fulfilment this can bring, particularly when in a healthy relationship. But many of us don’t understand our drive for God. He is our ultimate source of fulfilment. Every core of our being becomes alive and energised in an encounter with him. He is transforming!
I can’t emphasise enough how knowing God is not just intellectual or emotional. It is also deeply spiritual. And this spiritual experience is tangible and available for everyone!
God wants to reveal himself to us. Why don’t you ask him to. He’s waiting… with love and forgiveness like an ocean.
“You will seek me and find me when you seek me with all your heart” (Jeremiah 29:13).
No Whinging
I can’t stand whinging. And certain kids of ours are quite good at it! The phrase ‘stop whinging’ has had a good workout, now it’s time for something more creative. So I’ve made up a song. It won’t win platinum, but it’s been gold in our house over the last few days. A nice little tool in the parenting chest for relevant moments, and the kids are even having fun with it! It stops the whinging and brings a laugh. Josiah doesn’t like having it sung at him, so he sings it back louder. I don’t mind – he’s singing the message!
In this video, we sang it for Kristin for the first time. Kiara and Micah joined in the fun. Josiah wasn’t interested – he just wanted us to hurry up and finish so he could continue playing his game with dad, but he had a laugh reading my blog just now. Summer and Sarah are at a respite house this weekend, so they missed out on being in the video.
The Extremes of Summer (my daughter)
I 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.
Truth, Lies and Anxiety
I have a theory. Does this resonate with you?
When people lie to us, and we have no evidence that they are lying, we have two different responses from two parts of our being. Our mind listens to what is being said, and finding no evidence to the contrary, agrees with the lie. But our spirit senses the lie at a spiritual level and is grieved. Whether our spiritual awareness is small or great, an incongruence now exists between our mind and spirit. Our spirit and mind are not resonating in unity and this creates discomfort in the emotional realm. Anxiety and mistrust are the result. We don’t understand any of this in our mind, but it happens anyway – the fruit of experiencing an unknown lie.
Think of the spouse who is betrayed by infidelity. They don’t know, but they do know. Anxiety, mistrust and turmoil grows. Or the boss who fires an employee, but gives a soft reason instead of the real reason. The employee’s mind is relieved, but the spirit knows otherwise. Anxiety results.
The solution to this angst is truth.
But for many, this is a problematic solution. Truth is often deemed too painful and therefore must be disguised or hidden. But if my above theory is true, then lies do greater damage in the long run, as they destroy inner peace. The best solution may be speaking the truth (with love, not hate). Truth accepted by the mind creates a united resonance with the spirit, and our emotions are therefore more at peace. And don’t we all want peace!
If this theory is true, then this has important implications for our lives not only as individuals but also as a society. For anxiety is rampant and we need to understand its causes. It begs the question – how much of our anxiety is the fruit of lies? It could be minimal, but I suspect it is enormous. For lies do not just come to us from individual relationships, but they also come from society as a whole. If the philosophy that we build our lives around is simply not true, then how much greater the anxiety and inner turmoil. We are building on sand.
As a deeply personal response, I believe that truth is found only in Jesus Christ. He is my ultimate peace. This is not theoretical for me. This is my experience on a daily basis, to greater and lesser extents, depending on the day. His truth brings me much peace. It slashes misconceptions, which may initially be painful, but also bring enormous relief.
My quest is to keep seeking God’s truth and to challenge every part of my life that does not flow with his life giving Word! “The truth shall set you free” (John 8:32).