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.

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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.

That’s it! Half term’s finished, summer’s long gone, Halloween’s almost over and the count down to Christmas begins almost immediately. Riley and Sonny have had a week and abit off school and the last few days of the holidays were our kind of bliss. They were settled and really getting stuck into the activities we did. It was full of everything you’d want an Autumn break to be. Long walks, adventures, baking, carving pumpkins and spending time with your family.

The boys had their cousins come round to play and with that brings the best sort of fun. I love sitting back watching the mischief they make. It’s important to encourage positive relationships with extended family. It’s those relationships they will look back fondly on in twenty years time. They will reminisce about those times they spent digging in the dirt, running in the fresh air and making up silly games. Me and my sister were trying not to loose our minds with the dirt, the paint, the glue, the food and the spillages. They need the space to express themselves like that don’t they? Even if it meant Sonny giving his little toy dinosaur a PVA glue bath!

Sonny you might not realise it but I watched you have so much fun this half term. Not all at once I confess. The start of the week was hard for you, but you embraced all the changes by the end of the week. YOU ARE AMAZING! You loved spending time with your cousins. They love you Sonny. They may not always understand the things you do but they see you for who you really are, crazy, sweet and incredibly funny. You were sitting on the chair by the front window when you saw their car pull up and I’ve never seen you move so fast. You opened the door for them, you always have to be the one to open the door to our visitors. You squealed and hugged them so tight they’d barely got through the door. Zachary and Riley joined you and you all ended up in a group hug at the front door while Auntie Charlotte and Nanny waited to come in.

School has started another term and it’s going to be full throttle, not much time to think in the run up to Christmas. School trips, plays, cake sales, the winter fair. The mornings are cold and dark and the little ones are harder to rise from their beds. We take the 20 minute walk to school and it’s chilly out. Sonny has become used to wearing his clothes for home, his new boots and coat are a new comfort. It becomes a battle to get him to wear his uniform and he doesn’t want to wear his school shoes. Sonny wants to stay and play with his toys and we end up taking half the toy box under the buggy just to avoid arguments. Getting out the door is half the battle won.

Time to get ready for school Sonny. Let’s see how quickly you can get your uniform on! 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. You throw whatever is in your way and it takes lots of patience to calm you down. Riley let’s you win Sonny, he likes it when your happy. He pretends to struggle to get his arms through the sleeves of his jumper or that he just can’t get his socks on. You laugh and cheer when you beat him. We all laugh. I give Riley a little wink and a cuddle to say thank you. He’s a good boy.

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Zachary is usually in the pushchair for the walk to school while Riley walks beside us picking up ‘birdy berries’ for them to throw like poke balls. Sonny hops off the buggy board every now and then but soon jumps back on when he realises he just cant keep up. Its foggy in the mornings, Autumn is in the air. We stop to admire all the cobwebs glistening in the bushes. You don’t realise how many are there until the morning dew makes them sparkle. There are twice as many leaves on the ground than last week, the boys love to scooch their feet along, gathering leaves up to their knees and its hard to walk. We get to school just in time, allowing that extra 10 minutes is crucial to us either being early and having a cuddle in the playground or arriving just as all the other parents are beginning to leave. I don’t like to start the week off being late. I hate being late. The boys don’t mind and they mill along with not a worry in the world. I remember being like that, those days were good.

I’m glad you went in to school with a smile Sonny. I worry about you, I hate to see you struggle. You get so overwhelmed you hurt yourself and others around you. It breaks my heart. You make me laugh and break my heart all at the same time every day. Getting you ready school today was hard wasn’t it? Your collar is itchy and your socks are tickly. Your shoes feel strange and you don’t like to eat so early in the morning. The clocks went back and you don’t feel right. Its light in the morning again? Your pockets in your new coat are huge and you love that you can fit your dinosaurs and your trains in them with ease. You chew your fingers all the way to school. They look sore Sonny Bunny. You got cross with Riley this morning, he wouldn’t wait for you after I told him to. You jumped up on the board and we caught him up. He was sorry, he didn’t realise he was going too fast for you. You got cross that the Lollipop Man wasn’t wearing his popcorn socks. You didn’t want him to wear soldier socks. Maybe he will a have his popcorn ones on tomorrow.

We got to school just in time. Riley went to his classroom just as the door was about to close. I don’t like sending him to school in a rush, but he looks behind and waves and blows me a kiss. I wish him a good day, tell him I love him and to be good. Sonny goes through the school office where he is met by his support teacher. He doesn’t go through with the rest of his class, it’s just too much commotion for him to start the morning with. Sonny has 1:1 support at school for all of every day, and they are amazing with him. He has his own personalised time table and his own black out tent for when he’s feeling overwhelmed or cross. Sonny has his own area of the classroom which has a desk just for him, a little book case with his favourite toys and books and a little display board which is decorated just to his liking. Lucky boy.

We got there Sonny. First day back at school finished. You are so happy to go though the office in the morning. It makes for a much calmer you. You spot your teacher and jump with excitement! You give me the toys from your hands and pockets so you have free hands for your special greet handshake. How does it go Sonny? High five! Down low! Both together! Wiggle your bottom, let’s go! And off you go to spend a little time in the den, you’ll join your friends when everybody settled down for the morning. I wave you goodbye and blow a kiss and quietly hope that your day is kind to you.

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