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Milestones Worth Celebrating!

I remember standing in a gymnastic hall. All the equipment surrounded me, the parallel bars, beam, trampolines and other strange equipment that I don’t know the name of.

Others were energetically lunging themselves into the foam pit, or doing fancy somersaults on the trampoline.

Kids ran around us joining in with the toddlers open floor session. Some joined in with the songs and their corresponding actions that were being enacted on the open floor. Others were energetically lunging themselves into the foam pit, or doing fancy somersaults on the trampoline.

As parents followed their children around the different pieces of apparatus, I could overhear a parent next to me. Her little girl was about two, and carefully tackling the well thought out obstacle course that had been setup by one of the instructors. Her mother held her hand as she walked over the soft mat up to the low ground-level beam. “Come on darling” she said “you can do it”.

The little girl was nervous but reluctantly put her first foot forward, the only stability she had was from her arms which she spanned out on either side of herself to distribute her weight. As she took each step, she came closer and closer to the other end of the beam. Her mother slowly walked next to her, judging if she was going to make it, ready to grab her hand if the wobble became a potential slip or fall.

The mother watched her daughter’s every step, but she only watched with one eye, because her other eye was on the rest of the room. She checked to see if anyone else was witnessing this achievement in the making. Her daughter was in her element, she was reaching a milestone worthy of an applause.

As the little girl took her last step and accomplished the great feat, her mother lifted her in the air, and slightly louder than required said “Well done, you are amazing” then swung her around and looked for the next opportunity for success.

I turned away from this celebratory event and stared down at Rhys. He sat on the floor oblivious to all the people, children and noise around him. I followed his line of slight across the wide open space and up the wall about ten meters away from him. Half way up was a white clock, the numbers one to twelve around the edge.

Out of all the activities, entertainment, and gymnastic equipment, he had chosen the item that had the least relevance to the situation, but an item that meant more to him than any of the things that surrounded him.

I had no hope of getting Rhys to walk a beam like that little girl. I had no ability to even get him to engage with the room. The clock on the wall was his only interest, not the ability to display his achievements of somersaults or dismounts off a low beam.

Since this situation about five years ago, I have overheard many milestones being celebrated by parents. They are being celebrated in parks, play centres and all across social media. A video of a childโ€™s first words, or a little boy initiating a pee all by himself behind a tree because he knew he needed to go!

Rhys is accomplishing so many things, but often I feel that I don’t have enough words to describe the mountain we have climbed to achieve them. It is so hard to explain the feeling when Rhys runs down an unknown path for the first time, or he says “drawing”, taking a pen in his hand with no reluctance, or he understands a simple command like “pass me that book!”

… to others it just doesnโ€™t seem to be as bigger deal to them as it is to you.

It is a feeling of wanting to shout it from the roof tops. It is not like the mother in gymnastics who secretly invites you to share in the accomplishment. In contrast, you want to fly a banner through the sky and publish it in a newspaper. But to others it just doesnโ€™t seem to be as bigger deal to them as it is to you. Their children did all these things as part of their ongoing development. They are not milestones they recorded or celebrated. They just happened!

But that doesn’t matter because they are not their child’s achievements. They are Rhys’ achievements. They are the result of hard work, and I have realised that I don’t need the acceptance from others to confirm that they are worthy of a bottle of champagne, because I know what we have gone through to achieve them. He may have taken a bit longer or a lot longer to get there. But it is not a race, we all do it in our own time.

There is no need to look to others for acceptance that something is worthy of celebrating. We all know that feeling inside when something remarkable happens, and when I look at Rhys, I know deep down he is celebrating with me too.

๐Ÿ•๐Ÿ•‘๐Ÿ•ง๐Ÿ•ฃ๐Ÿ•ž๐Ÿ•œ๐Ÿ•Ÿ๐Ÿ•ข๐Ÿ•ฅ๐Ÿ•™๐Ÿ•ฆ๐Ÿ•š๐Ÿ• 

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7 Tips for a Perfect World Book Day

๐Ÿ“š World book Day ๐Ÿ“š
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 donโ€™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 โ€ฆ

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 ๐Ÿค”

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 ยฃ60 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!

๐ŸŒ๐ŸŒ๐ŸŒ๐ŸŒ๐ŸŒ๐ŸŒ๐ŸŒ๐ŸŒ๐ŸŒ๐ŸŒ

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My perfect boy in an imperfect world โค๏ธ

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,ย 
I do try to play with you but sometimes you just want to keep lining your toys on the floor.ย 
ย 
It kills me that you get so angry and upset,
I know I havenโ€™t got it all figured out yet,ย 
I would love to be able to see the world through your eyes,ย 
To know what is hurting when I canโ€™t stop your cries.
ย 
Sometimes I grieve for the things you will not do,
Even though I would never change one thing about you,ย 
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.ย 
ย 
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.ย 
ย 
I hope you know that even when I am tired and stressed,ย 
The day you were born we were truly blessed,
Tonight I will wrap my arms around you baby and just hold you tight,ย 
Thereโ€™s always tomorrow for me to get it right โค๏ธ

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 โค๏ธ

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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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