Take my hand...it's dark out there (a mother living with Autism)

This is for you Lukey!

Luc had a hard weekend. After another 4am wakeup on Saturday, he looked beaten. As I pushed him on the swing in the cold morning air, I cursed the autism that messed with his sleep so easily. I wondered how we would all get through the day. On days like these we are wrecked, physically and emotionally.

I had barely enough energy to push him and he didn’t care too much. He had barely enough energy to complain. Getting mad about it is treacherous. Because there are so many years ahead of us and I have the distinct feeling that these are the easy years. So much goes unseen and unsaid.

I love him so completely even when I feel lifeless. I watched him on the swing and wondered if he realised how many people had his back. Would he ever know how many people, near and far, known and unknown, family and friends were looking out for him, for all of us? Would he ever comprehend how much they cared, how his tale and how his battered little smiling face affected them? He had no clue about the hours of training that were behind us in preparation for the marathon that his dad and his aunt would run in his honour. He had no idea what all the commotion was about. And how much his wellbeing means to us. And the lengths we will go to for his personal peace. I know he feels our love and devotion. And I’m so thankful for that. It’s one of the first things we teach our kids, to be thankful. It’s one of the first words they learn, when they can speak.

Even if he could speak, how would he begin to thank so many people for what they have done, what they have given, what they continue to give? How do you ever begin to thank your dad for loving you so completely that there is nothing that he wouldn’t do for you, no blister he wouldn’t endure, no aching knee that he wouldn’t keep running on because you needed the prize so much. How do you say thanks to the people that have become so important in the blink of an eye, the ones that have come back into our lives by chance, who know the life we live because they live it too, who’s eyes fill with tears when ours do even though no words are spoken. And how do you even begin to thank all the special families that have become our brothers and sisters and our unbelievable support network, who help us face each day knowing it will all be ok because they stand right beside us. And how do you thank the overwhelming generosity of that anonymous donation that is so incredibly special since that person who pledged their support does not even need the thanks that they are due. That blows my mind. If I knew who it was I’m not sure I would even know what to say to them. And how do you thank those that have done so much already, who have given up their husband and their dad while he ran his own race for the cause not so long ago and after giving so much already, have given even more. And what about the people that don’t even know Luc all that well, but that listen to and care enough about the mum that comes into the office a couple of times a week and then disappears again so quickly. How do you thank them for their silent support? How do you thank all those that live so far away, but that always check in with us to make sure we’re OK and who care as much as they did when they lived so close. And the people from Luc’s past, that stay connected with us through the words they read and who give as generously as though they still saw us every day. How do you even begin to thank a group of complete strangers who know nothing of Luc or our family but who read a blog about a dog called Dixie and who sprung to action, dug deep and took time out of their lives to make a difference to a troubled little kid and his family. And there are some people who need no thanks, to them each smile Luc gives them and every moment he spends with them, relaxing on the swing they built in their backyard just for him, is thanks enough.

And to that beautiful, shiny soul that is my little sister. How can we begin to thank her for her courage and her commitment to Lukey. I know that when she looks into his big brown eyes she can see how much he loves and trusts her. And even when he is at his worst and we are at the end with him, I know I can count on her to breeze in, hunker down with him and I hear her words as she whispers them so softly in his ears “Lukey I love you soooo much”. He knows her smell and her touch even in the darkness and her words do so much to reassure and appease him. And there isn’t much she wouldn’t do for him. And even though he can't read it, I know he can feel the tribute she wrote to him amongst a billboard full of messages last Sunday. “This is for you Lukey! Til xx”.

And this is the most sincere and heartfelt thanks to all of you for what you have done for Lukey. Stephane knows all too well that I hate asking for help, of any kind, but the reality is that we could not have done this without your help. So in the words of my little sister “this is for you Lukey!”. From all of us that have your back.

Peacock

Life is too short to think small. This is how my husband views life. He has massive ideas and plans for the future. He shoots for the stars and doesn’t suffer many fools. He’s impatient and can’t sit for longer than sixty seconds and when he’s forced to, like when he’s eating a meal, his leg shakes impatiently. He’s training for a half marathon and runs for many, many hours every week. His energy leaves me breathless. His relentlessness makes me feel inferior. He’s amazing. Really he is. He’s a ‘take it or leave it’ kinda guy. He’s a ‘take ME or leave me’ kinda guy! And that is how he came to be known to me as my peacock. Big and proud.

The peacock has been home the last few weeks, in between jobs. He’s been busy around the house, around the local traps having coffee, doing school drops and pickups and spending endless hours with the kids.

I’ve officially lost Ava. She’s defected to the other side only wanting to be with her Dad, unless there’s another school mum within reaching distance and then she’s lost to both of us. She has learned to brush her teeth, gargle and spit exactly like her Dad does. She ends each day with dirt between her toes from gardening with her Dad. She knows all her favourite books by heart because she reads them with him every moment she can. And she doesn’t want her mum anymore. She loves her Dad “ten furty” and she only loves her mum “eight”.

Amelie has been more divine than usual. I hear Stephane tell her endlessly that she has to be kinder to her mum and show more respect. I listen to him asking her “have you thanked your mum for that play-date today, you know she’s been awake since 5am and has worked all day and she’s come home and entertained you and your friends. Have you told her how thankful you are?” I can see the look he gives her the moment she opens her attitude filled mouth and then she closes it again. I see her smile widely as she waves me goodbye every morning and walks off with him to school. I saw her look at me anxiously at her open day yesterday and mouth to me “where’s Dad?” She has even started to make the same little sounds her Dad makes. Some of you will know the ones I mean.

Luc is so amazingly blissful and gorgeous. He has been sleeping a little better now that he has Joe back again during the day and when he gets home each day he scuttles right by me searching for his Dad and when he sets eyes on him he is literally beside himself. He jumps and runs and honestly it is like a freak show to watch. He clucks himself to sleep and clucks himself awake. He is by his Dads side like a little shadow for every waking moment. His afternoons have been free of the boring shower/dinner routine we are all so used to. Instead he gets daily trips to Bunnings, Coles and the park. He is in heaven. 

I feel the busy-ness of having our peacock home. My routine is non-existent. Dinner is rarely prepared early and we have been out more lately than ever before. I’m in pyjamas till noon some days and some days we leave the house early together and come back after school pickup. It’s been a very decadent and luxurious time for all of us.

He jokes that he doesn’t know how he’ll go back to work. I feel a little anxious about it to be honest. Not for myself. Actually yes for myself, and these little lives that have had the best time ever over the last few weeks. I feel like we’ve been living in a dream state. The house is always full of friends and their children. Luc has become so accommodating of the changes in our routines. I think he’s come to love the craziness as much as his peacock Dad who thrives on it.

So the peacock has one more week left before he embarks on the next phase in his career. He’s a bit nervous I think. He found it hard to leave his beloved TravelEdge. But it was time for him to spread those peacock feathers and move on. There will be some people there that will miss him. And there will be some people at home who miss him too. And we’ll swap the madness of today for the old predictable routine once more. And once more Lukey will wait sadly at the front door until he hears those keys jiggling as his Dad walks up the garden path towards us. I am sad for Lukey most. The girls are more resilient than he is when it comes to their Dad. But Luc will struggle again for a while. And I will cajole and distract as best I can while cursing the autism and it’s anxiety. And I will gently hand him the ‘Daddy will be home soon’ visual that Joe gave me. It’s worked wonders while Stephane has been out running for hours on end. It’s torn and tattered from Lukey’s tight grip and endless kisses. But it gets him through. Mostly.

Today a work colleague told us the devastating story of her daughter's camp bus returning to school yesterday after four days away. As they neared their stop at the school the girls on board caught sight of one of their friends mums crossing the road with her baby in her arms. They called to their friend on the bus beside them "look there's your mum and your baby sister!" And within seconds that mum and her baby had been hit by that bus as they hurried across the road. Her mother was killed instantly and her baby sister survived, shielded by her mother's body on impact. That girl, her baby sister and their siblings in between will never again hear their mum's keys jiggling as she heads home to them. My kids are so lucky however long they have to wait for their Dad to arrive home each day.

And it’s a good thing peacocks move so quickly. Because the sooner ours is home each night, the sooner his little peachicks can love “ten furty”, speak more kindly and cluck more loudly again.

The pattern of a little life

The pattern of a little life is leaving me exhausted. Only in my travelling years would I see the sunrise voluntarily. I remember travelling through the US once and waking bleary eyed in Vegas determined to drive to the Grand Canyon in time to see the first light of the day fill its’ deep chasms. It was spectacular and worth the hazy, sleep-deprived day that followed.
 
I’m not so in love with the idea of seeing the sunrise these days. Each night when I close my eyes I silently pray to be woken by my alarm for once instead of by Lukey's sweet little cluck signalling the start to my day at 3am. He’s incredibly cuddly and happy when it's just him and I lying in the darkness side by side. And it might really be a special time for us if I weren't so tired and grumpy. Some nights, if I'm really lucky, he’ll put his head down on my chest and fall asleep again listening to the sound of my heart beat. And that's how it always starts. I lie as still as I can and even if I need to move a leg or an arm that is painfully wedged against the wall I don’t move a muscle. I almost stop breathing so I don't disturb this little body lying against me for comfort. Mostly the stillness lasts only a few minutes before the stretching and the clucking start again, more loudly. I tell him sternly to lie down. And he does. But before long he's moving again as he becomes more alert. And within seconds the light is on, the piano keys are creating the early morning symphony he loves so much and the drawers are being emptied of photos as he searches for the one that he needs to look at first.
 
When I finally drag myself out of his bed to start the day I'm screaming for some rest before the day has really even begun. And a few hours later I'm rushing out the door to deposit children at school and carry on with the day. And on Saturday's I find myself pushing Lukey high on a swing while the girls go to their swimming lesson. I feel so far from exhilarated while I try to breathe in the fresh air. Occasionally I'll be blessed with a phone call from Aph and we complain together about how tired we are. Those calls always make me smile. She is good at reminding me that I'm not alone in my exhaustion. She is good at reminding me about a lot of stuff. Most importantly that it's OK to hate this life some days. It's not the life itself I hate, I think I got over that a while ago. It's not the boy himself, I adore him beyond words. But the feeling of lassitude is debilitating after a while.
 
So I sit a lot these days. I sit to play with Ava, I sit to do housework when I can, I sit to work, and when there's nothing left that I can do sitting down I stand up reluctantly. It's scary to realise how little sleep the human body can exist on.
 
And to all of my beautiful friends out there who feel like I do through choice, I'm jealous. The thought of a late night just because I feel like going out is almost foreign to me at the moment. But I do envy you. A lot. Some people spend a lot of time dreading the day when their kids will be too old for that special middle of the night cuddle. Some are sad that their kids no longer want to sleep with them. Me, not so much. Like most things in my life I know that I will have my little life partner right beside me a lot of nights for the rest of my life. And there's a lot of sweetness in that too I know. 

Like every other pattern he lives with, Luc does love the early morning wakeup, really he does. And his day is better for it. He isn't as highly strung, not as wired. The edge comes off his energy levels a little. And he seems happier than on the days that he sleeps through the night, crazy as that sounds. And I'm reminded what it must be like for him to live in a body that despite it's daily cocktail of medication, finds it so difficult to achieve much calm. It must be so difficult for him to constantly listen to the noise in his head and to constantly need to expend incredible amounts of energy just to make it through his day. I admire him for the battles he faces every day.
 
So this son that I adore can have my companionship during the night when sleep has eluded him. I must become more gracious about it. After all it was less than a year ago that everything seemed insurmountable.  I will never forget it and now Luc could not be further away from that broken little soul that he was back then. And while we aren’t blessed with many peaceful nights, we are blessed with a pattern that has really come full circle. And even on the days when our troubles can seem a mile long, they’re really only an inch deep.

Superbly perfect in every minute flaw

At most doctors’ appointments I feel like I’m walking through cobwebs. On Monday Luc had an appointment with the neurology team at the children’s hospital. It seems there might be something going on with the right side of his little body making his muscles stiff. Turns out it could be a condition that puts pressure on his brain and spinal cord which may require surgery. Or it could be that he had a tiny stoke while in my womb and there may infinitesimal holes in his brain letting in fluids that shouldn’t be there. Or it could be a condition caused by long term use of one of his medications. “So it’s time for another MRI” said Doctor Neurology. And he also said that we might find nothing at all, but that his strange little walk might be a tiny clue to help us find exactly what syndrome he has. As I said, it’s like walking through cobwebs for all of us. It’s annoying and it doesn’t feel great but you can’t walk backwards out of them, you just have to do your best to peel them off your face and body and just keep walking.

We’re really OK with it all. The MRI might find nothing at all so why worry until there’s something to worry about right? Absolutely. Just another stone to turn on this sometimes thorny path called ‘raising Luc’. And the irony is not lost on me one bit. This stiffness on his right side causing his funny gait has coincided with one of the most beautiful periods in Luc’s life. There is no perfect day with any of my kids. So I’m not about to tell you that life is easy. It’s even less predictable now than it has ever been before. Like a few weeks ago when we took the kids to the beach for a walk and an ice cream. Who would have guessed that we would find ourselves in the middle of about a trillion people watching Luc object to being at the beach by dropping and collecting the pavement with his head, loudly and violently. And who would have thought that in that moment, in that very public and humiliating moment, that I could not find an ounce of understanding and strength to cajole or distract him. But it’s not always so fraught. Who would have thought that this morning as my girls yelled at each other about who deserved to go to Aph’s house after school, that little Lukey would walk straight into the middle of the madness and tell me that HE wanted to go to Aph’s house. Even his sisters looked confused as it dawned on them that he was not only watching the chaos but that he was listening and deciding that he would go too. An onslaught of kisses followed him.

It’s all just a bit too amazing to fathom at the moment. Life is so full of one paradox after another everywhere I look. It’s making my head spin. And in a strange way it feels like white noise, full on but strangely comforting. When there’s no noise I’m restless now. So when it’s time to cross the MRI bridge for the second time in his short little life, we’ll just hope for the best for Luc and know that the road before us was already there before we arrived to walk it.

I spend a lot of time hoping we never find exactly what it is that is ‘wrong’ with Luc. I know that things aren’t always what they appear to be. And Luc is proof of that. At first glance he is needy. There is just so much ‘wrong’ with him. But I have always felt like there's a miracle waiting for Luc out there somewhere. I’m not sure where or when or what or how. I don’t know what another MRI will find but I do know that whatever they find, or don’t find, won’t define him. Because to me, he is superbly perfect in every minute flaw and I thank him every day for just loving us and loving his life just the way it is, cobwebs and all.

Detachment

Deepak Chopra’s ‘Law of Detachment’ says that when you want something really deeply in life, like with every fibre of your being, then it order to attain it you need to detach from it. That sounds so impossible to do. Think about it.

During Luc’s first week back at school he arrived home every day really anxious. His days were wonderful and he got off the taxi pretty chilled out but within a few minutes he would take hold of my arm and bring his little face in really close to mine and cry softly like a wounded animal and make his little ‘ahhh ahhh’ sound. He makes this sound when he needs something from me, like when he needs me to tell him what is happening, or where he is going, or generally just to comfort him with the knowledge that he can go to Coles after school on Wednesday with Dad, or to the carwash on Saturday or to see his Taita and Judoo on the weekend. Usually just the simple things that are fundamental to him.

But each day that week, it didn’t matter what I told him I was way off the mark. He would just hold my arm even more tightly and inch his troubled little face even closer to mine and keep making that sound. His eyes were pleading with me on those days, they were saying “keep going mum, try something else because that’s not what I need you to tell me, you’re almost there PLEASE keep trying mum.” And each day I failed him and as he got more desperate for the ‘right’ words I got more anxious that I was getting it so wrong.

Anyone that has known me since Lukey was a little boy will know that I have never placed too much importance on speech for Luc. And that’s because I’m not sure his brain is wired to be able to talk. We have always done our best to teach him every other communication skill that he could learn. But now that his mind is so much better at wanting and needing so many different things, I feel like he is frantic some days when he can’t tell me what he wants. Most kids with autism can speak but they don’t until we find a way to make them want to speak. Our old speech therapist said to me one day many years ago “I promise you that if a child can speak, they will eventually because speech is so much quicker and more effective than any other form of communication”. So all these years later, I just don’t think his speech pathways are built right. He would have spoken to me by now wouldn’t he? I have seen him speak to me in my sleep so many times. My mother sees him speak to her in her dreams all the time. I have vivid memories of a dream I had so many years ago when I was putting on his socks and he said to me “one sock on, two socks on” repeating what I would say to him every day of his little life hoping he would copy me. But he only ever copied me in my dreams.

I spend moments of some days wishing my girls would stop speaking for a minute, and I spend every other moment of every day wishing my son would speak to me endlessly. I wish he would say anything at all, anything. His tiny voice is melodic when I hear it blow kisses or cluck or whoop. I need so much to hear him ask me for something, even just to say ‘mum’. What I would give to hear him say my name.

So Mr Chopra, that burning need with every fibre of my being is there. And I’m not wishing for wealth or a new car or a nicer house. I would never ask that of the universe. All I want, more than anything, is for this amazing universe and all of it’s spiritual laws to help my son speak. That’s all. And it’s on my mind every minute of the day like I said, but it’s in the background of every day. I still wake up each day and do what needs doing. I still apply my makeup for my scientist friend, and I still go to work and play with my kids, help them with their homework and have coffee with my friends. But in my mind’s eye, the one that sits in the background of this life, is my innate sense that it’s time for my son to speak. If that’s not detachment then I think I might have it all wrong. I’ll keep working on it. But I do believe that we get back what we give in this life. I carry that belief with me every day.  So I will always hope for Luc to speak. And some days that hope will be more frenetic than on other days. Science might tell me I’m crazy, but it feels right to hope. Comforting even.

"I'm a scientist"

She was selling me bunk beds for my girls but apparently that wasn’t her real job. The sale was made and while discussing delivery of our new beds one thing led to another and I told her that delivering flat packed boxes to my front door during afternoon peak hour wasn’t going to be a good idea because I had a child with autism that was likely to flip out about an unexpected onslaught of furniture during one of the hardest parts of his day.

“Autism?” she said. “I’m a scientist and I’m interested in autism. Turns out she was in between jobs, and that she was really a scientist with a keen interest in autism because she did a major study on it as part of a practical assignment. She then forgot about the delivery details and asked me a battery of questions about Lukey. Was his autism mild or severe? Was he verbal? What was it about a delivery of boxes that he would find disturbing? Did he go to school? Where? Was he medicated? Was I? What???? Did she really ask me that? Yep she did. Turns out that she had worked with some families living with autism and what she learned from them was that all the mothers were medicated, overweight because they were medicated, couldn’t string a sentence together without losing it, didn’t eat well, didn’t exercise, were stay at home stressed out mums, didn’t have husbands and most of them rarely had more children.

She was lovely really, both before and after the Luc discovery. But boy was she deluded. I say that in a nice way because I didn’t walk away from her annoyed or upset, just surprised. She seemed to think I was amazing because I had three kids, I worked part time, I wore makeup, I could keep it together long enough to buy beds for my daughters and I had a beautiful husband in tow. The only annoying thought I had was that the professional world could be so far removed from reality. I know I’m generalising when I make that comment which is wrong of me but she isn’t the first professional I have dealt with over the last nine years that has had a very fallacious impression of families living with disability. I have read reports that have called me neurotic and have advised Luc's referring doctor to assess my emotional state simply because I dared to disagree with a statement made by the ‘professional’ or because I had the audacity to question a medication being prescribed for Luc or because I had anything to say at all really. And when I’m silent I solicit the same response – that I must be unstable. I don’t disagree with professionals often. I get that they are the ‘experts’ but what they don’t always get is that I am the ‘expert’ when it comes to my son. Full stop. 

On the way home from our bed buying encounter with the scientist I smiled to myself at the thought of all the mums I know that live with autism and with disability. From the accountant, to the dentist, to the teacher, to the teacher’s aide, to the speech therapist, to the corporate banker, to the airline exec, to the uni student and right back to me again. Apparently we are a minority because we deal with the life we have and just get on with it. We may not be scientists but we have our shit together, we all have husbands and other children. We all have friends and we all get up each day apply makeup and iron our clothes and live the lives we have without looking back at yesterday and wallowing in self pity.

But really it’s much the same as the single mums and dads raising kids, and the people living with cancer or other illnesses. It’s much the same as a grumpy old man living alone. And it's like the wonderful old friend who never found the right person to marry or the one that did but despite all her efforts is unable to fall pregnant. It’s the same as the person who lives too far away from the ones he loves because it was best idea at the time. And the person mourning the loss of his wife and children in a horrific accident. We just all get on with it and do the best we can. Because as my mum always tells me “be grateful for him, he’s beautiful, and there are people out there that have it so much worse than you do”. And she reminds me of her friend who lost all three of her children to disability. One by one they left this world. And still she smiles at their memory. And when I saw her after she lost her last child, her only daughter, she said to me “Yvonne, don’t let anyone tell you it’s too hard. It’s not. I would give anything to have all of them back even if only for a moment”.

And that is what my new scientist friend will never understand. That science might teach us about the complicated stuff, but the simplest stuff is best left for those of us too blessed to mourn the battles but to live them and move on instead.

 

 

Normal to me

The first part of New Year’s Day was spent on the beach. Finally the summer weather seems to have arrived in Sydney and it was a beautiful way to bring in the new year. And then a lazy afternoon was spent at home while Ava slept and we pottered around the house and garden. I found Amelie sitting outside on the back step looking at a very old photo album of Luc when he was a new born. I sat beside her and was immediately transported back in time. It seemed like a lifetime ago that he was so little, so fresh. His tiny little body could be held easily in one of Stephane’s hands. His right foot was in a cast to correct the talipes he was born with and he laid under phototherapy lights to help rid his little body of the jaundice he had developed in his first week of life. He looked so frail and so helpless in that little crib but in almost every photo a hand or a finger could be seen stroking his delicate little body.

Then more photos of his first Christmas. Stephane and I looked tired but so happy. We were tired but so happy. Do you remember the giddiness of your first child being born? Such a special moment and so much time and attention lavished on one tiny individual that arrives and turns life on it’s head. Suddenly we are enthralled and can’t think straight, a little bit because of the fatigue but mostly because of the overwhelming love we find ourselves brimming with. That first Christmas was so easy, only one little one in our family at that time easily passed from grandparent to aunty to uncle and to Dad and then back to Mum for sustenance, a far cry from the chaos of Christmas now.

I looked long and hard at those photos and at the albums that followed. There were Luc’s first six months of life in front of me. I studied them hard. I looked for even the tiniest little clues of what was to come. His paediatrician always compares Ava’s progress to Luc’s. He always tells me “surely you can see the difference between how Ava developed in her first few months of life and how Luc did, right?” Um, no not really. What did I know back then anyway? He was the love of my life (and still is). He looked perfect to me. I was told his jaundice and his talipes were both very common. And I know now that they are. So how was I to know what would come later? But still I looked at those photos like my life depended on it. I don’t know why it matters. It doesn’t really. But for those minutes on the back step with Amelie it seemed to matter a lot. I could feel her stare at me while I looked. I could hear her unasked questions. She is so clever and so intuitive she didn’t need to ask the questions that I knew were on her lips. So we just sat together and stared and turned the pages and stared some more. He smiled, he played, he looked at us and recognised who we were. He ate and he burped and he cooed. He loved a bath. He loved and was loved. So what did I miss then?

Only a few months later when he was seven months old and not sitting independently, life turned on it’s head yet again and the merry-go-round began. Therapy took over our lives and took over all of Amelie’s life too when she arrived. Not that she ever complained once. It was all she knew and she was happy to be there in amongst it all with her brother. She learned a lot and impressed many people in the process. She still impresses me when I see her with her brother and with our other special friends. And she has always been and always will be a lifeline for her big brother.

You may be wondering why I write this now when so much time has passed. I’m not sure either but I never really looked at his baby photos too closely before. Maybe I was scared that there was a sign I missed. But there wasn’t. Not in those early months anyway. And even if I did what could I have changed? It’s all turned out the way it was meant to and as life continues for Lukey and for all of us I find great solace in that fact, that it will all happen as it’s meant to. 

I don’t think I missed anything back then. I think I just saw what any first time mother sees, nothing but beauty and crushing love, pure and simple. I still catch my breath when I look at him. With Amelie I catch my breath because she is so beautiful to look at and so amazing to listen to. With Ava because she is so funny and so affectionate and strong. And with little Luc I still catch my breath when he gives me that little innocent smile, all for me, that reminds me of when he was so new and so fresh and when I knew no different, back when he was as normal to me as he still is today.

"Excuse me, must you be so rude...

…my son has autism, he’s not intentionally trying to piss you off!”

Hi everyone, it’s been a while, deliberately because there hasn’t been anything controversial to write about and the good stuff gets boring to read after while. But yesterday, I made a super quick stop at Aldi (I don’t think that Aldi and Luc and I mix to be honest) and these were the words I heard escaping my lips at the checkout.

Stephane uses the autism card whenever it’s required. And that’s fine. I would rather skulk into the background with Luc and exist around everyone. I see a long queue as an opportunity to spend time talking to Luc, singing to him, cuddling him and teaching him tolerance. A motherly thing I guess. But it wasn’t even about a long line yesterday, the autism card was only drawn when I saw an uncaring old man take Lukey’s little hand way too roughly and wrench one his supermarket products from them. Luc is mostly unflinching at an odd touch or a stranger too close, but yesterday he looked disturbed and bothered at this stranger’s actions. It’s not just Luc either; any child would have been upset, as would any mother. Sophia Loren once said “when you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child” and nothing is truer when it comes to a defenceless child like Luc. I felt every bit of anger inside of me rise to the surface and froth about dangerously. His apology was a startled one and his gaze finally fell on Luc’s face as he realised that Luc was different. His apology was useless in the face of my fury. “Learn to open your eyes and look around you” I flung back at him. The girl at the checkout looked at me apologetically, they know Luc and they don’t even bat an eyelid at his Aldi antics anymore. He’s like the store pet to them.

It wasn’t a very Merry Christmas and a Happy New Year moment. I reflected on it later once I had calmed down. Most of the time I feel like life is a series of car rides. For the most part I’m driving in the slow lane minding my own business. Lately I’ve been a bit of a Sunday driver, I’m rarely in a rush and haven’t felt any stress or tension. Luc has been calm and Ava is getting more manageable out and about with her big brother and sister. She’s usually the one holding his hand and she takes her role as helper very seriously.

But now and again I feel like I’m being run off the road by some unthinking cowboy and I wonder what happened in his life to make him so bitter and resentful. Was he neglected as a child, has he been cheated on as an adult, is he lonely, does he have people around him that care about him? Or not. Has he known any heartache in his life, real heartache? I have always believed that a touch of heartache, even if it’s not actually yours, is a great lesson in how to live your own life, to be grateful for what you have and to never take things for granted. Sadly some people are surrounded by love and understanding and they are still bitter and unhappy. Mostly I wonder if these people will ever look back on their lives and have any regrets for the moments they should have spent being better people. Regret is so toxic. And more than anything, the way you chose to live your life is a choice. Think about it, it is a choice. I don’t wish regret on anyone. I just wish for a world full of better people, ones that are happy more than not, rested more than not, smiling more than not. Even at the strange looking kid in the trolley at Aldi that would make you smile if you let him, that would ask you in muted words for a special song if only you took the time to understand him or to ask his Mum what he was saying. If you let him, he would help you to let go of your bitterness, even just for that moment in time.

Simply, may 2012 be full of many more drives in the slow lane and so many more moments like the ones in 2011 that made us all smile, be thankful and be happy.

Red letter days

I’ve been feeling a bit lazy lately. Like everyone else, I’m slowing down after another massive year and my mind and body is ready for some rest over the Christmas break. And with this feeling comes the notion that everything I’m doing is not exactly one hundred percent. Instead it’s just a steady flow of OK-ness. And I am wondering where the last year went. So much has happened in my family, so much has happened in me alone. And the kids seem to be fine with my OK-ness which has made my idleness feel tolerable.

Luc woke up in the early hours this morning. It was 3am. He was sleepy and happy. And as I crawled into bed beside him he assumed his predictable position with his sleepy little head on my belly as he dozed off again. Lately I have the best sleep beside him, and as I drifted off my last thought was of where the last nine years have gone and how difficult some of them have been, and of how gorgeous the last one has been.

He is such a big boy now and it seems to have come from nowhere. I miss him. He spends so much time away from me these days that I really just miss him. So the cosy little bits of closeness during the night now and then are our moments to share, just the two of us, and they are precious. I am reminded of a fundraiser I went to recently. A beautiful young lady was introduced to the audience. She has autism and she began her school life in a supported school environment. Her progress was so vast that by high school she was in a mainstream girls school from which she graduated and she is now studying at university. She sang for the audience. She was amazing. So sweet and delicate to look at with a voice like silk. The lyrics she sang brought tears to the eyes of many mothers in that room. She sang an old ABBA song “Slipping through my fingers”. I know this song well but I’ve never really paid much attention to the lyrics before. They are so moving as a mother sings about her child growing up quickly before her eyes and how the years of that little life seem to have just slipped by. She sings about waving her child off each morning and feeling like she’s “losing her forever”. She wonders how well she knows her little girl as that “precious time” goes by unnoticed, unchecked, unaccounted for. I guess all mothers know that “melancholy feeling” that surprises us now and then. As the years go by we look towards the future and we are excited for our kids and what their futures hold. But if I’m honest, I look towards Luc’s future with some trepidation and sometimes it stops me dead in my tracks if I think for too long about it.

“The places I had planned for us to go

(Slipping through my fingers all the time)

Well, some of that we did but most we didn’t

And why I just don’t know”

When Lukey is all mine, even for just those few moments in the middle of the night, there is absolutely no place I’d rather be and I lose all anxiety about the future. Perhaps I'm a coward at heart, and my laziness is what helps keep those demons that I’m not ready for at bay. But the future is all in the making, in the every day, and I feel safer in these beautiful little moments that make up each day. Those early morning cuddles, the little kisses on the back of his neck, those times I feel like I can see straight into his soul as his eyes meet mine and he holds my gaze for what feels like an eternity, the adorable little frenzied kiss he gives me on his way out the door each morning when I whisper to him to ‘please be a good boy today’ and the cheeky little grin I get in response. Yes sometimes I feel like Luc’s little life is slipping right through my fingers too, and then I remember all of these moments and they are like bright colourful strands of tinsel, like the sunset on a perfect summer’s day, like clean sheets at bed time, like his first morning smile with sleep still in his eyes as he stretches his beautiful little limbs awake. They are pure and innocent and they make me heady with love. These moments show me that he’s OK, that we are OK. And that even though his life does feel like it’s going by too fast, I’m right here beside him watching it all with eyes that see. For these precious times that I feel languid, I’m just being granted the freedom, for a change, to feel less stress and more peace, to be a calmer, slower mum and one that lives each day watching my children around me with no fuzziness. It feels odd to be clear of mind, almost forgeign. How beautiful it feels to notice, embrace and reflect on our moments. I feel spoiled right now. It makes every day feel like a red letter day.

No questions needed

Yesterday our littlest Nicholls turned two. I don’t think she really understood what all the fuss was about. She loved playing with her new toys and when someone wished her a happy birthday she just nodded with a cute little smile pasted on her face. Luc didn’t really pay her birthday much attention but he was very kind and loving to his baby sister so maybe he did realise that it was her birthday. Only Amelie was in the full swing of the celebrations making good use of all of Ava’s new toys as they played together all morning. 

For me, it was a day to reflect on what her arrival meant for my family when two became three. Oh how I miss the peace and quiet, the predicability of two, the calmness of Luc when a voice was rarely raised, the job of one each for Stephane and I when we leave the house. I miss having my side of the bed all to myself without a little person sneaking in during the night and wedging her feet in my face while she sleeps. I miss the quiet dynamics of two kids who never had a cross exchange the whole day. I miss the luxury of no sleeps needing consideration while planning the day’s events. And I miss shopping with a child that actually loved it as opposed to one that thinks that a Westfield’s is her playground and that lie down tantrums in the middle of Target are totally acceptable. 

But all the things I hoped to feel mothering a third child have been plentiful, abundant in fact. She is so loving and so sweet. Her little hands feel like silk on my skin when she touches my face as she falls asleep in my arms. Her little feet are so gorgeously pudgy as they roam around the house and garden. She is talkative and funny. She is independent and fiery. She is so clever and so delicious to smell. When she asks me for a cuddle I tell her they are free and she can always have them whenever she wants them. She is so cute to watch as she plays and explores. She has made her aunties, uncles and grandparents come alive. Her cousins adore her and she is always the centre of attention amongst them all. She is her daddy’s little girl when his big girl is feeling too old to need her daddy. And when they both need him his arms are always strong enough for two. Ava is my little miracle. She has made me feel everything I missed out on with Amelie, when life was just too chaotic and melancholy, when all focus was on therapy, doctors and autism. Ava has given my mothering the thumbs up. She makes me feel like a first time mother some days and in some ways I guess I am really. 

And for Luc, his little sister might just be one of his biggest lessons in life. She came into his world from nowhere, and he waited impatiently for her to leave. He was unhappy and his equilibrium was disturbed. And I don’t really think he has ever found that equilibrium since, but slowly over the last two years he has learned to accept and love the stranger he was so jealous of for so long. He has learned to watch his sisters and love them both. And while they all fight most of the time, he has come to accept that Ava is as much a part of the family as Amelie. He has learned to wait, just a little bit, when his sister needs to be fed or changed. He has learned to share his pillow with her during wind down each night. He has learned to kiss her good night each night and he has come to accept that his mum, dad and grandparents are to be shared. He has realised that the baby is a force to be reckoned with and that it is in his best interests to respect her space. And I know he loves her deeply, at last. Stephane told me about a year ago that Luc and Ava would be best friends once day. I laughed at that suggestion. But now when I hear her tell my mother that she is saving a biscuit or a drink or a chocolate for Dodo (Luc) then I know that he was right. Like Amelie, Ava rarely has to fight Luc for anything. He is happy to just do his own thing and exist around his sisters these days. And a strong character like hers is instantly drawn to his gentle passive nature. It is less threatening and confrontational than that of her typical big sister. And when his autism is beside him, without understanding it yet, she is so accommodating of it. She lets it in and does whatever she can to soothe it and cajole it right back out the front door. She tells him “no Dodo, stop!” and she is so unafraid as she gets as close to Luc as she can while he tantrums. She asks no questions yet. She will one day, but for the moment Luc is not different to her, he is just her big brother. No questions needed.

So while three is a circus almost every day, it is the necessary chaos we all needed to help us focus less on the autism and more on living a normal family life. Until Ava came along there was no jealousy, no vying for attention, no sibling rivalry, no chaos and madness. She has made all of these things happen in our family so I guess she has been the injection of normal that we were missing for the longest time. And for Luc, she is the one that silently says “Dodo, get over it, wake up and smell the roses buddy. Life is good in our family”. And he silently answers back with an amused look that says “yeah you’re OK little sister but don’t forget who was here first.” And so it goes.