All posts by AMe

7 Tips for a Perfect World Book Day

📚 World book Day 📚
A day to celebrate the joy of reading and to encourage our younger generation to explore hidden magical lands, discovering tales of adventure and courage.

Thursday will see some amazing costumes, from the extraordinary ten pound ready-made costume from Amazon, to the parent who has delicately crafted a costume from scratch (hats off to those folk).

Any dress up occasion for Rhys is a challenge. The fussy material, the added weight and inconvenient additions to his clothing. He won’t have it. He is uncomfortable in any abstrusity or difference to his normal comfort, and that’s when I actually manage to get him into something for a few seconds.

These small events, like costumes for World Book Day, are the memories that us parents of children with special needs miss out on. I just want to be like everyone else for once. I don’t want people thinking, “Oh that poor child, their mummy forgot about today” not realising the fuller picture and challenges we face.

But I have found ways to make Rhys part of the day and hope that these tips can mean your children can too.

  1. Accessorise
    Choose a book/character that is just an everyday boy/girl. Then add the accessory.
    Charlie Bucket: Normal clothes with bar of chocolate.
    Dennis the Menace: Jeans with a red and black stripy t-shirt and added slingshot
    Harry and his Bucket full of Dinosaurs: Normal clothes with a bucket packed with all the dinosaurs you can find.
  2. Top it Up
    Find a T-shirt with the book character. Amazon is great for this or some supermarkets have the rights to specific books/characters.
    Last year Rhys was perfectly happy to go in his Gruffalo t-shirt, purchased from Sainsburys.
    Search Amazon for “T-shirt World Book Day” there are amazing t-shirts for Marvel Characters and many other books, including Diary of a Wimpy Kid.
  3. Customise
    Rhys will happily wear some items but the fussiness of others are a bit too much. If you have a costume you think will work but the hood gets in the way, or a piece of material is a bit scratchy, carefully cut it off. Use the costume as a starter for 10 and make it your own.
  4. Create Your Own
    If you are feeling creative and have the time there are so many options with this one. A plain tshirt can be the foundation of many costumes.
    101 Dalmatians: white t-shirt painted with black spots.
    Stickman: brown t-shirt with black lines in the shape of tree indentations.
    Funny Bones: black top and bottoms with a skeleton painted in white.
  5. Keep Your Hat On
    Rhys has a love/hate relationship with hats, but it is a great option for a costume.
    Wearing some plain clothes, add a hat with the book character.
    The Velveteen Rabbit: buy a brown, bunny hat, and dress in plain brown clothing.
    Room on a Broom: Witches hat and dress plainly in black and purple.
    Where’s Wally: white hat with red bobble coupled with red-white t-shirt and jeans.
  6. Onesies are for all Occasions
    Rhys loves to feel snug and comfortable. Onesies are amazing items of clothing, and with the variety on offer, there are loads of ideas for World Book Day. From animals to famous book characters, or just simple printed onesies with no fuss, only comfort.
  7. It is not just Fiction!
    Last year my eldest went dressed as a dinosaur with his 101 facts about the Triassic period under his arm. Books are not just the fairy stories we love, they are also the reference books and encyclopaedias we dip into from time to time.
    If your child already has a favourite outfit or t-shirt/jumper, use that as your reference, then find a book to associate with it.
    The Wonder of the Solar System (Brian Cox): wear their favourite space t-shirt
    Seven Worlds One Planet (David Attenborough): Enjoy while wearing their favourite monkey onesie
    Counting to 10: Wear t-shirt with a number on the back.

Always remember the book and either get them to carry it (good luck with that) or more realistically hold it yourself and wave it around your child in the school playground to demonstrate your efforts. If you don’t have the book, take a visit to the library or do a shout out to friends to ensure you have the ultimate World Book Day item.

The last tip for this day …

The change in dress code plays havoc for us in regards to differences in structure and confusion of whether it is a school day or weekend day 🤔

As Rhys gets ready in his World Book Day costume on Thursday, the last item he will put on is his school t-shirt. It will go over his costume defining the day as a school day. In the past his older brother has been amazing and worn his t-shirt on top of his costume in pride, helping Rhys know what day it is. The visual representation of a school day is on display leaving the normal routine of a school morning to progress.
At the last minute, when putting on our coats, we will pull off the school t-shirts, and be ready to go. We will be just like everyone else, because there are times during our challenging lives where we just want to have a moment to fit in and be part of the crowd.

What will you be doing for World Book Day?

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We Are All A Little Autistic!

“We are all on the spectrum”
“We are all a little autistic”
“I get scared in strange places too”
“I am not really a social person”

I have so much to say when I hear those words. I have so much to share and explain.

I have so much awareness to raise on a condition that is part of our lives, part of my son.

I want to respond to those comments. I want to let people know what autism is.

Autism is not feeing anxious about new surroundings, or a child crying because they don’t want to leave their mum. Autism is the strange sound that reverberates through the body, the strange smell of the floorboards, the overpowering vibrations of the crowds running across the wood panel floors. It’s the overwhelming sensory input that means it is impossible to enter a room no matter what reassurance is given.

Autism is working through multiple scenarios in your head, dissecting days out that have ended because it rained that day or I put wellies on my son’s feet instead of trainers.

Autism is never having a play date, because your son doesn’t have any friends.

Autism is when your son is invited to a birthday party, but you have to decline because you know it is a magic show where the magician uses a PA system that cannot be tolerated by your son’s hypersensitive hearing. You make some excuse about a family event, but in reality you just sit at home because you don’t have the words to explain. The birthday invites then stop coming, because you are seen as a parent who never takes part.

Autism is answering for your child because you don’t know how to explain why they can’t answer for themselves.

Autism is answering to a stranger when they ask your son “Hello, what is your name?” because he cannot talk or understand the question. You don’t have the strength to try explain the complexity of the situation, because the stranger is just the cashier in Morrisons who you will never see again.

Autism is taking your children to the zoo, only to have to return to the car after ten minutes because your son cannot cope with the smells of the unknown location. You let your other children grab a treat in the gift shop while you beg for a refund or just forfit the £60 entrance charge. You cry because your autistic son’s siblings have looked forward to this day, but lose out because their brother can’t cope.

Autism is sitting on the supermarket floor, while your son has a meltdown. Shoppers pass you by, looking at you and wondering why you just don’t discipline your child. But you know you just need to sit and wait for the pain to subside. Being there is the only way through it.

Autism is taking your six year old son to swimming lessons, but still being in the parent and toddler class because that means you can be in the pool with him. Parents of two year olds watch you wondering why he hasn’t progressed. You ignore it, you have grown a thick skin that simple stares cannot penetrate.

Autism is planning everything to the most minute detail. You dissect situations that fail and try again and again. Scenarios and plans are so engrained in your head that you become an expert and execute them like clockwork.

Autism is knowing words are not the only way to communicate. You crouch down to your sons eye level and hold up pictures and schedules. Ignoring the onlookers, focusing on the key communication strategy that works.

Autism is panicking when the new taxi to school has a sliding door instead of a swing open door. A change that can set back your son’s education. A situation you have not planned for or envisaged, and stand with waited breath and fingers crossed in the hope it will all be ok.

Autism is hard, but autism is also pride. Pride at what your child can achieve.

Autism is hard, and difficult to explain, but autism is also pride. Pride that barriers can be broken down, and goals exceeded. Where new ways of living can be found, and a strength you never knew existed breaks through from nowhere.

Autism is shock at the things your child can do, beyond any ability of your own. The photographic memory, the association of numbers or the high speed rotation without any dizziness in sight.

So before you comment or undermine the challenges that autistics and those supporting them face, ask a question instead. Ask for information, ask how you can help, or just smile and say, “You are doing ok mum, you are doing great”.

Because autism is not a tut, or a mutter of bad parenting. Autism is life through a different set of glasses, a life we are trying to navigate through where the maps don’t yet exist and rulebooks are still being written.

We are still creating a world where we can all belong, and we need all kinds of minds to achieve that!

🌏🌏🌏🌏🌏🌏🌏🌏🌏🌏

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My perfect boy in an imperfect world ❤️

Guest Post by Lauren Morfett

Everyday I ask myself was I the best mum I could be today
Did I help you learn what you needed to through play,
If you could tell me would you say that I could of done more, 
I do try to play with you but sometimes you just want to keep lining your toys on the floor. 
 
It kills me that you get so angry and upset,
I know I haven’t got it all figured out yet, 
I would love to be able to see the world through your eyes, 
To know what is hurting when I can’t stop your cries.
 
Sometimes I grieve for the things you will not do,
Even though I would never change one thing about you, 
It just makes me sad to see you struggle and regress,
I feel like my heart is being ripped in two whenever you are in distress. 
 
I love watching you jumping and spinning around,
I love that even with no words your voice is my favourite sound,
Your such a happy boy who deserves the best,
Your a star Isaac who shines so much brighter than all the rest. 
 
I hope you know that even when I am tired and stressed, 
The day you were born we were truly blessed,
Tonight I will wrap my arms around you baby and just hold you tight, 
There’s always tomorrow for me to get it right ❤️

Lauren Morfett is a mum of two learning every day about the beauty of autism. Isaac is 4 years old and an amazing kid who has taught her more about this world than anyone she knows. It can be hard and it can be a struggle but when he smiles everything is worth it ❤️

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Home is where the HEART is!

Guest Post by Emer O’Hara

There’s no place like home, there’s no place like home, there’s no place like home!

These famous words from Dorothy in The Wizard of Oz have never rung so true in these unprecedented times we find ourselves in. Home is a haven, home is our safe place, home is where the heart is. But what happens when this safe space, this safe haven is all your non-verbal wonder understands. This is the home we have tried our very best to create for our 7, almost 8, year-old beautiful boy. 

His space in our busy family home of 7! (plus not forgetting our new puppy, Griffin). Home is chaotic, full of life, full of madness, full of jest, full of happiness and, sometimes, full of fear. Fear to think what might happen if we forget to lock all the doors and windows, ensure the back gate and front gate is securely closed, car keys are hidden and someone we trust (if not us) is constantly watching over our very own Buzz Lightyear! His safety is our first concern 24/7. This may sound restrictive, may sound overwhelming or controlled but yet it is our safe haven, a world which we have created as a large family, a home where we feel happy, a home where we can be free.  We have even moved 11,384 KM from one home in Singapore to another home here in Ireland but the essence of “our” home structure despite being in a different continent is still the same.  

This is a time in history where we hope all families can find their freedom, their `’tribe”, their happiness within their family homes. No-one could have imagined how this virus would change our existence, would change our everyday. We felt that way when our son was diagnosed with Autism, how would our days be spent, how would we protect our family, would we be able to do enough to keep him safe? The answer is yes, the human spirit, the human core, our basic instinct is to protect the ones we love whatever it takes. Having a child with different needs helped us clarify and remember this fact. 
Perhaps for some, COVID-19 may have awakened that clarity.

No judgement, no pleas for change, no words of wisdom only an understanding we can’t do things on our own. Life constantly shows us that. Change is inevitable, change is refreshing, change is evolving and most importantly we too must change to survive. There is no escape from this; we are thankful for the frontline staff who work tirelessly to keep us safe but they can not do this alone. Stay home, build your kingdom within your walls, feel it with love, music, laughter, poetry, dance, planting vegetables and Art. Let change be a word that inspires you rather than fear taking its hold!

Painting of Samson (his sister Hope found joy in ART during the lockdown and this is her version of her baby brother)

In my early days as Mama (17 years and counting these days), I filled my home with busyness, I ruled the roost with endless lists of things to do, that was a happy home I thought.  How this has changed; now home is where everyone living in it is able to feel safe and creates their own haven. For our two teens, it is chatting with their friends from around the world on SKYPE, for our eleven-year-old daughter, it is drawing, baking and watching her favourite Youtube videos, playing Minecraft and Homeschool in Heel’s day!! 


I must admit this Mama enjoyed that day too!!

Heels

For BuzzLightyear, our non-verbal wonder, it is digging up our garden (actually that would have upset me in the past but now well our new garden does need to be dug and re-levelled by someone) and walks by the beach or in the forest (all within our 5 km boundary that is). 

Max & Samson (he ain’t heavy he’s my BROTHER!!)

For us parents we are enjoying sitting in the garden, reading, wishing for red skies at night (soon to return we hope). Its been a long winter! We are trying our best to keep the calm within our walls yet aware Mother Earth is aching.

Red Skies

From the O’Hara Safe Haven to yours we conclude with this quote (and a lovely photo memory my Brother in Law snapped the last time he visited us from the UK). Oh, how we wish we could see family overseas again soon 🙁

“Many people spend too much time trying to be the captain of someone’s else’s boat. Learn to be a lighthouse and the boats will find their way”. 

LightHouse

Acknowledgements for images: Robert James O’Hara (LightHouse)


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Worry vs Wonder

The tears ran down my face. They came from a place of hurt and stress and uncertainty. The result of the feeling of nothingness. A sense of loss. The loss of the life I thought I was going to have. A vision where me, my husband and three kids, would go on crazy day trips together, create memories and do the things that every other family did.

My life expectations had been pull out from beneath me. They had been wiped out of my life plan, my vision for the future. My son had received his diagnosis. A diagnosis, that although would never change who he was, it would change the way I thought our life would be.

I started to ask myself questions.

I started to worry.

The worry was for every day things. The stuff other families just did without thought, but for us would take the planning of a board of directors.

The worry about his education, how he would learn to write, to read and to add up numbers. I worried about his future and whether he would get through high school, and then what? What would he be capable after that? Would we choose mainstream or a special unit? I worried what that all meant!

I worried about small things that were actually such big things.

I worried about small things that were actually such big things. Like whether he would ever form friendships or have a friend. What about the traditional marriage and two point four children? He currently wasn’t socialising, or able to talk or integrate or follow instructions. How would he ever have a friend? Would he be alone and not feel that bond with someone? Would he ever experience the fun, naughty and exciting things that friendships guarentee?

I wanted him to come home and tell me about his day, about what he had done, and where he had gone. But he couldn’t. He was pre-verbal, not a sound to convey or even the ability to converse in any other way to tell me about his daily adventures. I worried that he had been sad, or bullied, or alone, or even had an amazing day. I never knew. My son just stood with a blank stare, and not a word muttered, not a sound exchanged.

I worried about where we could go or how a situation would play out. Often outings were filled with stress, with meltdowns, with stares from strangers who tutted and wrote it off as bad parenting. I lost my excitement due to the worry that things would just crash and fall apart. What reason was there to get excited in what was doomed to fail?

I worried for my other children who had to take this challenge on their own shoulders. Who had to be on the sidelines missing out on things which should be guarenteed as part of their childhood. I worried about how they felt when their brother was in a state of inconsolable distress, and their feelings ignored while my focus was fundamentally on controlling the more intense, urgent situation on the floor in front of me.

I knew we needed to change. I couldnt continue with the worry, the uncertainty of my son’s future.

So we changed.

We shifted our mindset, realising that the future could only be influenced by what we could influence today.

We started to disect every situation, and analyse every step. Me and my family worked together. We striped out the worry through factual analysis and plan execution.

And with that change we started to move forward.

I realised that the only way I could change the future was by shifting my perspective. As I looked down at my big blue eyed boy, with his long blonde surfer locks, I saw a child with purpose. A child who was happy and content and determined to do what he was interested in.

He didn’t care about the stares or the fact he only ate pizza every single night for dinner. He did however care for me. His cuddles and snuggles into me when he was scared, his laughter when I tickled his belly, and his smile when I threw him in the air. He wasn’t worried for the future, he was happy in the present.

I had to change myself, and not keep looking for ways to change my son.

I had to change myself, and not keep looking for ways to change my son.

I started to focus on what he wanted, what that day held, and how we could overcome the challenges which were present in the present.

As soon as I changed my perspective, and as soon as I stopped and watched my little boy, I saw his quirks, his strengths, his warmth and personality. We worked on strategies, which improved his engagement, and over time finally lead to speach. We changed his school to one that met his needs, something I worried about constantly before, where I had worried about what others would think, what others would say.

I turned away from the stares, the comments, the harshness, and looked through the eyes of my child.

I stopped worrying.

I started to wonder.

Through all the changes and development, my boy started to smash down the barriers. He started to meet milestones. Not the milestones in the published parenting books, but the milestones we had set for ourselves as a family. The ability to leave the house, the understanding of where we were going, the engagement between ourselves and our children. My son started to prove the world wrong.

I stopped, and I wondered.

I wondered what the future now held for my son. It was not a worry, it was a wonder of what other successes were on the horizon. What new experiences we would create and enjoy.

It was not a worry, it was a wonder.

Our lives were different now. But that didn’t mean they were worse. Just different.

The tears fall less frequently now, there are more smiles and moments of laughter, as I wonder what tomorrow has in store.

Change your perspective. Don’t worry about a future you know nothing about. Focus on the present and instead of worrying you can start to wonder.

#worryvswonder #fcvblogsquad

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