A Life In Perspective

Those of us who have been following our journey and have read our most recent blog post will have known that two weeks ago we received some devastating news. Our entire family was brought to it’s knees. Those that know me well, will know that family means everything to me, Joe and our boys mean everything to me.

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‘CATCH!!’ said Cancer 

Just when things settle down and the future you’ve always dreamed of, craved even, is just millimetres from your outstretched fingertips, life throws one hell of a curve ball. I don’t just mean a little hiccup or minor bump in the road, I’m talking CATCH! as quickly as the word sounds, a forceful chest pass, ball-on-fire type curve ball.

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Not Step, Just Family

I loved the way my nicknames for them flowed effortlessly off the tip of your tongue and how they would chase you around calling your name. It was the way you nibbled their toes and pretend to pass out from the stench of their feet, even though they didn’t smell at all. It was the way in which you snuggled together on the sofa with the iPad while stroking their hair the same way I do.

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5 Things This Autism Mummy Dreads

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For any parent who has a child with Autism, meltdowns are something we are all too familiar with. The polar opposite to a tantrum, they can be painful to watch. It is hard to see your baby, the one you have nurtured and protected all this time, to act so uncontrollably, loosing all reasoning, seemingly unaware of the consequences or the dangers around them. The most difficult part is knowing there can be very little you can do to help them, more often than not in public places with all eyes on you. Along the course of our day, we face many challenges. There are various triggers all around us, usually simple things that you and I would be unfazed by. We do pretty well to distract away from or avoid triggers but some you just can’t escape. These are some of the things this ausome mummy dreads.

Food

One of the most challenging aspects of our day is meal times, or any time involving food for that matter. Sonny has to have the same thing for breakfast most days and giving him something different requires planning, preparation and much much negotiation. Spillages, broken food, dropped food. All things that make Sonny climb the walls with distress. Food has to be of a certain texture, served on a red or blue plate and if he can eat with his hands he will. Lasts nights spaghetti bolognaise was eventful to say the least. As I tucked him into bed, he said ‘I’m very sorry Mummy, I messed dinner, my t-shirt.’ Sandwiches at lunch are to be of the chocolate sort and no other. Cut into triangles, absolutely no crusts, served with crisps and fruit. Nothing else will do. To be honest, when it comes to food we pick our battles. I am just relieved to see him eat.

The Unexpected

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Who likes the unexpected? Who likes change? Not me, that’s for sure! I figure we are quite alike in this sense. Sonny cannot cope with any planned or unplanned change to his routine. If we were to take a different route to school, if Sonny’s 1:1 support teacher was unwell and not at school like last week this would spell disaster for him. It would mean tears and tantrums, full on meltdowns and an emotional mummy. Since starting school I have watched my thoroughly mothered but happy little boy become a very anxious little boy. It would take a brief glance at his fingers to see. He always has his fingers in his mouth and more often than not doesn’t seem to realise what he’s doing until I ask him to stop. There is change and the unexpected every way he turns. I can only imagine how that must feel.

Bin Day

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Wednesdays, glorious, glorious Wednesdays. Oh how I love thee (not). Each Wednesday is the day the bins in our area are collected. Sonny’s least favourite day of the week and mine for that reason. We leave for school each and every weekday morning, our route to school unchanged, simple and direct. However on this day, we leave to the pathways are cluttered with bins everywhere you look and this just doesn’t sit right with Sonny. It just won’t do. Sonny hates things are obstructing his route to school. In the beginning, it took every ounce of my energy to explain to him that we could quite simply go around them. I would move the odd one out the way, but trying to complete the 20 minute walk to school in time with three children in toe is not the easiest of tasks. Quite frankly moving wheely bins is not on the agenda.

Games

Sonny loves games. Sonny loves competitive games. Sonny loves to race. Only, I repeat ONLY if he can win. His uncontrollable urge to win and be first is the cause of many scraps and squabbles in our home. Sonny needs to get his bowl first, pour his cereal and his milk into his breakfast bowl first. As well as using the biggest spoon he can find first and finishing first. The first to open the door, the first to reach the other side of the road and the first to reach our front door home. The list goes on and on. Sharing and turn taking is not a concept easily understood or abided by in our home. We try our hardest to play games together. ‘It’s not fair!!!!!!!!’ he cries as he bucks Buckaroo back just as ferociously. As ferociously as Buckaroo did whilst Sonny precariously placed his suitcase on his back.

Noise

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What do you do when your noise sensitive child is simultaneously the noisiest person you know? That’s not a question I have the answer to, other than just let them do their thing. Some days Sonny cannot bear the noise of the television, the loud buzz of a hedge cutter or his brother humming a song. Zachary, only 2 years of age, is fully aware of Sonny’s noise sensitivity and will scream as loud as possible to see his reaction, much to our delight. On the other hand, there are moments in our day when Sonny thrives on being as noisy as possible himself. Clucking his tongue and clapping for seemingly no reason. Then there are times, he really notches it up a gear, and bangs spoons on the sink and repeatedly slams the stair gate against it’s fixtures. Whatever it is he’s doing and for whatever reason he’s doing it for, it’s quite clearly a sensory input he is needing and that’s okay with me.

The most important thing of all, no matter what the day brings, is that we have each other. We love, we understand, we support one another wholeheartedly. We show kindness, empathy and thanks.

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The rest will all fall into place.

X

 

When Catch Up Coffees & Kids Don’t Mix

Looks from fellow coffee drinkers around us only added to the pressure. I’m certain Zachary knew this and upped his game. He knew I was trying to keep him hush and he wasn’t having any of it.

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Monday Not-So-Fun-Days

Your calmer when your home. It’s what I love the most about weekends. No post school meltdowns. Not quite so tired and agitated. A pleasure to be around.

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To My Special Needs Sibling

Did I cherish you enough in those two years before your brother was born? Did I soak up every little bit of you? Your little fingers and toes, the smell of your freshly washed hair after bath time, the dimples in your cheeks when you smiled at me? Was I everything you would wish a mother to be and more? I hope so.

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I Was Sad But You Smiled

I knew it was coming. I picked you up from school and was handed a letter. It read ‘a whole school trip to the pantomime’ and I felt sad. I looked at you Sonny and you were happy. You smiled at me with your cheeky grin and those big blue eyes, I smiled back and ruffled your hair before tucking the letter into my bag. You’re so sweet but I felt sad.

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Same New Beginnings.

You love to win, you always have to win,  it makes you so cross when you loose. I try to help you understand it’s good to share, when we share everybody is happy. When you don’t win you throw yourself on the floor and scream and cry.

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