The Life of a Special Needs Parent

Special needs parents lead different lives.

We spend a life of searching. Sifting through websites, articles, picking up rogue posts off social media, or a snippet of information from a conversation. Information which will change things for our children going forward.

In the begining we quickly realised that there was no special parenting guide or resource base where everything was waiting for us. You had to find it, and they hide it so well, scattering it in a multitude of places!

We lead a life of fighting

We lead a life of fighting. Fighting the authorities for the best support and education for our children, and then fighting to keep that support. We fight for a referral, and then have to wait months, sometimes years to get the services we deserve, to only get pushed aside with a written report ready to file away with the others.

Our children are discharged from speech and language specialists when they are still unable to communicate or speak a single word, leading to new fight to keep what you were promised.

The documentation is endless. Multiple write-ups of our child’s development, always in a negative tone, visually showing in black and white, all the things our children cannot do, rather than the difficulties that have overcome or the amazing barriers they have smashed down.

We hold legal documents which define the education to be delivered to our children, and then fight the schools to deliver it. Education that is published as free for all, but really it is just for those where it is easy to cater for.

We lead lives of staring and comments. A life where we stand out because our children are louder than others, or attract attention to themselves by shuttle runs up and down supermarket isles or getting super excited at a moving piece of equipment, their hands flapping in a overload of euphoria.

We communicate differently, in ways we have had to research, try, fail and then finally succeed with. Stooping down to our child’s level and holding up pictures or round coloured traffic light cards, to help them understand what is next or about to end.

Stares come from those parents who can just shout for their kids to follow, confused at why we don’t just tell our children through voice commands about what to do. They hold their heads up high thinking they are better parents that us – but we know different, we know how far we have come.

We have to contend with angry parents whose children have been pushed, hit or kicked by our child. We try to articulate that the reason wasn’t out of violence, but rather a form of non-verbal communication, or frustration or sensory overload. We continuously voice our apologies for something out of our control. But those parents don’t listen, they just want justice for their hard, a hard that is so much different to ours. So we start to avoid those places, we steer clear of those people.

We know all about sensory overload, an area which meant nothing to us before. We learn how to help our children manage it, how to notice the signs and places to avoid. It becomes a central reason for the way our children act and how we coordinate everything we do.

Our children can’t go to all the places.

Because our children can’t go to all the places. Some places are too over-whelming. It could be a birthday party, or a catch-up at a play centre, or an unknown location you don’t have a picture for. We decline these places because we know the potential outcome. We know it may not be pretty.

We are however parents who make our own rulebooks. We create new goals for our children, milestones you will never find in professional checklists or folders. We punch the air in jubilation when our children manage to zip up their coats after years of hard work, through the use of strategies and techniques we have mastered along the way.

We high five our partners, keeping our celebrations within our tribe.

We high five our partners when we watch as our child follows a verbal instruction, because we have had years of them not understanding, just sitting blank faced at our request.

We keep our celebrations with our tribe, the parents who know the same struggles. Because there are no words to explain the feeling when your child finally says their first word, years after the rule book said they should. Other parents are past that stage, that phase was years ago, when their children were also celebrating their first step or ball throw. They have moved onto newer and bigger things.

We feel the loneliness, the separation from other families. We talk about our hard to those who understand, because only by living through it, do you know how hard it actually is.

But our children are still here. They may not be meeting the expectations of society, but they are exceeding all of ours!

Special needs parents are taking each day at a time. They are fighting for their kids. They are advocating for their children’s conditions and pushing for inclusion in a world which cuts them off.

And while we do that our children will continue to grow and develop in their own way…

Because..

…the world doesn’t define what our children are to become, our children define the world they want it to be.

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I Sobbed For So Many Reasons…

Guest Post by Sarah Halliday

“Hi Mummy”

“Hi Mummy” he said, looking straight at me, as he walked through the bathroom door to find me in the bath.

I stared back at my 6 year old minimally verbal son, mouth wide open, in utter disbelief.

And then I sobbed……

I sobbed because…well…let’s face it, it’s been a pretty difficult year.

I sobbed because it was the first time my son had said this to me.

I sobbed because of the years of therapy we had gone through to get to this point. The amount of hours spent holding out bubbles and waiting for the ready, steady….. GO!

I sobbed because for other families this is an everyday occurrence, but for us it is so rare.

I sobbed because of the countless courses and workshops and appointments I had attended on how to engage and play with my child in an attempt to initiate speech and encourage engagement.

I sobbed due to the many stories I had heard, and clung to, about when other children had started talking when they were 5/6/7 and at each birthday we were still waiting.

I sobbed because sometimes it’s all too overwhelming. The forms, the meetings, the new therapies, the sleepless nights, the forms……

I sobbed because I’m so tired.

I sobbed because sometimes it feels like there’s a glass wall between us, separating us from my world to yours, and some days I just want to smash it down into a million little pieces.

I sobbed because I saw a glimpse into our potential future, where we could talk and engage with each other.

I sobbed because…..it was such a happy moment for me…. full of hope and promise for our future together.


About the Author: Sarah is a mother to a very happy, lively 6 year old boy. Charlie was diagnosed with autism when he was 3 years old and they are still learning everyday. He now has a little sister who absolutely adores her older brother….he’s not so sure … 🙂

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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 ❤️

TOTS100 - UK Parent Blogs
TOTS100

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)


Do you have a story you want to share? Submit here.

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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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When Simple is Hard

“You get the coats, boots and hats ready, and I will do the toilet trips” I said. It was the standard pre-walk preparation we executed every week.

As we all bustled in the small cramped hallway at the bottom of the stairs, with coats consuming arms and hats bobbing up and down as the pompoms got excited for their daily trip out, one little boy was missing.

I looked around the doorway to see my son, Rhys sitting by the window with his book in his hand.
“Rhys, walk then swings” I said as I walked up to him.

“NO!” he screamed back at me, and kicked out, turning into a stiff board that would not be moved.

I immediately pulled out my phone from my back jean pocket, knowing I had to move quickly before anything escalated to a point of no return. I searched frantically through my picture app for what I wanted, but my heart was beating in my stomach. I hoped I had the right images. Images I hadn’t used in years, for a routine we had got so use to executing.

Rhys’ screams and frustration got louder as I finally found a picture of him walking through the forest and a picture of the park. I pulled the two pictures into a sequence, and held them up to him. “Walk then swings” I said, trying to keep calm and consistent with my tone, while the stress built up in my gut.

Rhys reluctantly acknowledged me and I was able to convince him out of the front room towards the front door. The rest of the family stood congregated and patiently waiting for us as I bent down to place each one of Rhys’ wellies on his feet. I was so nervous this would not go to plan, so I moved carefully and gently to try and ensure we were able to move forward and get out for the weekly walk. I held out Rhys’ coat, and he pushed each of his arms into their slots, leaving me to pull the zip up over his body.

I took a deep breath, and placed my hand on the front door, opening it and feeling the cold winter air rush past my bare face. Things happened in slowmotion at first and then it was as if someone had pushed the fastforward on our lives.

Rhys’ hand lifted upwards, grabbed the zip of his coat and pulled. His arms were out of the sleeves within seconds and he ran to the back room kicking out his feet in an attempt to eject the boots from his limbs.

I felt deflated. I felt like we had gone back in time by three years, to a time when this was a daily occurrence. A time when we couldn’t go anywhere. A time when I couldn’t cope.

“Do you want to stay here, and I will take these two?” said Justin, nodding to Jessie and Ewan who stood suited and booted on either side of him.

“Yes, you go” I said.

As half my family left and the door closed behind them, I felt my heart rip apart. We were divided once again, just like we had been years ago when we couldn’t take Rhys anywhere. Where places and activities were too much to cope with.

I walked into the back room. Rhys was sitting on the single sofa, his wellies still on his feet unable to be removed by his small hands. I knelt down by him and pulled each welly from its foot.

“Rhys, swings?” I asked, in hope that I could at least get him out the house, even if it still meant no family walk and just a trip to the playground.

Rhys just sat staring at me.

I grabbed my phone again and quickly googled ‘swings’, and held up a picture of a child on a swing. The image filled the screen of my phone.

No response.

I left the room and found his trainers. Returning to the room, I held up the picture on my phone once again. “Rhys, swings?” I said again, and then held up his trainers. My hope was fading so quickly, and I just wanted to collapse down in tears. Our life was so challenging, where a simple walk was just an impossible task.

But I held strong. I was desperate to try and find a way.

As I continued to show him the swing picture and meet him at his eye level, he suddenly let me slowly place each trainer on his foot, and with a “one, two, three” I lifted him to him to his feet.

“Swings, Rhys?” I asked again.
“Swings!” suddenly came a response.

I carefully put on his coat, my stomach in knots as the stress bringing a taste of sick into my throat,but we somehow managed to walk out the front door. At the end of the driveway, I went to turn left to take us up to the park, but Rhys stopped. “This way!” he said, pulling my hand to the right.

“Ok” I replied and let him take the lead, while I dug into my coat for my phone.

“Justin, wait for us, we are coming!” I shouted as my husband answered my call.

Five minutes later we had caught up with the rest of our family, and I collapsed into my husband’s arms, my body drained of energy, the stress and exertion of effort to get to where we were.

“I don’t know how you did it, but well done” he said, as he slowly wiped something out of his eye. We stood in the field for a few minutes as I got some of my strength back, then we walked forward. We walked onwards as a family, together again.

“I can’t go back to where we were” I said, “we have worked so hard at this”
“We definitely have” my husband responded ” We definitely have.”

As we walked forward, I watched Rhys run ahead. He must have felt as drained as me, but I knew a walk and some fresh air was what we all needed. It had been challenging, but our family walk was all we had at the moment. The only thing to keep us moving forward.

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TOTS100

A New Place To Sleep

I hear a sound through the darkness. It is quiet at first, then the noise gets a bit louder. I lie still as a rock, not wanting to give away my awake status to the occupant sharing my slumber zone.
If I just stay still and pretend I am in some sort of deep sleep – the game of patience, the game of who breaks first.

I am strong, I will not break.

The murmurs continue, and get loader, turning into a situation which confirms a wide awake occupant next door.
“Where’s Mummy gone?” come the shouts. A learnt phrase that is muttered in any event of stress.

I am beaten.

The request has come for me, and no matter what I say, my husband will use this request to his advantage. “He called for you” he would say, and when you have prayed for years for any ounce of communication, things like a shout for his mum cannot be ignored,

I literally roll out of bed, my pyjama bottoms having crept up to my knees during my previous hours of sleep, and my vest top is in some sort of disarray.

I ignore my appearance. It is 3am, so my fashion sense has no entry into review, as I walk sleep drunk into the room next door.

I look down at my little blonde boy in his bed. He looks up at me, love in his eyes for the person he has wanted.

I look back at him.

I have two choices, firstly to crawl in beside him, in the lower bunk and take my role in the mutual war to claim some bed space. I might get a few hours of sleep, and I am assured that Rhys will get some too. But the bunk is low, and I have been the co-sleeper in this bed for too many nights, I want to try something new. A deviation from the norm!

I want to try a suggestion that my other two kids request on a nightly basis, to which I give into every now and again. It is something that Rhys has done about twice in his life. Something bizarre to him, because bedtime and sleep is done in his bed. Because that is how it is done.

But I am tired. My bed is big and warm. An investment in a super king which was done for these reasons.

So I test the water. I make the suggestion. I hope for a change to the norm.

“Rhys, come sleep in Mummy and Daddy’s bed?” I ask reluctantly.

I suddenly stand in shock and take a breath. Rhys crawls from his bed, and takes my hand. Teddy’s arm held tightly, determined to join Rhys in his new bedtime adventure.

We walk the long ten steps to my bed, each step I hope that this is going to be the solution, but knowing changes to routine can be catastrophic. We walk onward in the dark, my hope to keep the sleepiness at bay.

As we reach my side of the bed, I lift Rhys into his newly found bedtime space for the night. I then climb beside him, and crawl under the covers, Closing my eyes, I hold my breath in the hope Rhys will settle and sleep.

As I lie in silence, a small arm suddenly wraps itself around my body, and all is calm.

A moment so small, but so big for us. My little boy wanting to climb into our bed, and being able to find it so comforting that he goes back to sleep straight away. Not movement or squabble.

It’s the little things that keep us going. The little middle-of-the-night cuddles. The little changes in routine which happen without planning or even knowing.

This kid is doing things his way, even at 3am in the morning!


Change Your Question!

Three years ago there was one question I asked every person I met, every professional and every support group. It is a question I now get asked all the time, and a question which I see asked on support groups every week.

That question is “When did your child start to talk?”

The answers are always varied. You get the one word responses detailing the age of people’s children, and then you get more specifics, like “My son could only say one word a year ago, and now he doesn’t stop” or “My daughter just started talking in sentences” or “I’m still waiting, my son is nine next week”.

Human nature means we look for the answer we want to hear. If your child is four, you will be drawn to the response from the kind lady with blonde hair who has written “My son said his first word at four and a half”

You will breathe a sigh of relief and believe that your child will be the same, and in six months time your child will say their first word too. I mean why wouldn’t they, the kind lady on Facebook wrote that her child did? Why would yours be any different?

But your child is different. They move at their own pace and have their own strengths and challenges.

So after waiting six months, and your child has still not said their first word, you will find yourself back on that support group or Google, looking for the next response, possibly coming across a response from dark haired Dan whose son went from non-verbal to talking in sentences at five years old. You relax once again and assume your child will be the same.

You need to stop asking the question “When did your child start talking?” because you are asking a question which has no relevance to your child. You are comparing your child’s circumstances to someone else’s child, one you have never met and know nothing about.

I know what it is like. I have been there. I asked the same question. I wanted my son to start talking, because in my head, that would make everything OK. If he talked, everything would be solved!

It’s not that easy. But there are ways to make it manageable. And that starts by asking the right questions!

Change your perspective and change the question.

Ask, “How did you get your child to communicate?”

Communication is so much wider than verbal speech. A child may be able to talk, but has not yet developed the perceptive language to associate words with real word objects. Similarly a child may not be able to speak verbally, but they are able to understand language and communicate with a device, pictures or sign language.

If your child drags you by the hand to the fridge and points to an apple, they are telling you they are hungry and want a snack. They can do that without saying a word.

The moment my son signed the word “more” to me with Makaton while blowing bubbles, we were communicating even before verbal language was possible.

I cried buckets over the worry about my son’s speech. I asked everyone the question “When did your child start to talk?” But trust me on this, none of the answers to that question were any help to us, they just upset me more. They set up expectations that were never met.

Forget about getting your child to talk, and focus on getting them to communicate. Ask the question “How did you get your child to communicate?” The answers you get to that question will allow you to implement changes, improve engagement, and move towards having a conversation with your child.

The answers to that question will give you strategies and tools to help you increase engagement with your child, help you ask what your child what they want and need, and also let them tell you how they are feeling or what they are thinking.

All before they even say a word.

Speech is the last bit of communication in the process. Forget about getting your child to talk, and focus on communication. This switch in mindset will move your child through the steps to communication and finally speech. And if they don’t reach speech, you will have a selection of different ways to communicate.

Because at the end of the day, we all want to just have a conversation with our child. But that communication is not always verbal.

🗣🗣🗣🗣🗣🗣🗣🗣

Click here to read how I got my son to communicate.

TOTS100 - UK Parent Blogs
TOTS100
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