Tag Archives: supermom

Worry vs Wonder

February 11, 2021 AMe

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

Uncategorized

A New Place To Sleep

February 5, 2021 AMe

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!

Autism Life

Erase the Word!

January 30, 2021 AMe

I remember sitting on a hard chair, going through the motions, listening to the analysis of my son – the reports and information which had been collated on him.

We spoke about his delayed speech, his lack of interaction and his low levels of engagement. It was hard dissecting every level of my child. Documenting where he was behind. Discussing where he was not meeting the grade defined by the milestones of the standard parenting guidance.

Then the diagnosis came.

Autism Spectrum Disorder!

“So is he high or low functioning?” I asked. Wanting to know where he fell on this so called “spectrum” I had heard so often mentioned.

I wanted the paediatrician to stand up and draw a line on the whiteboard behind her and show me where my son fitted on this high-low continuum that everyone talked about. I then wanted her to point me to the books and guidance of how to approach it. I wanted the toolkit.

The toolkit however never came, and over months and years I had to gather it together myself. This was psychology, it was not math. It was not black and white. It was not a clear definition, just a recognition that my son had social and communication challenges. I had to work it out myself and through trial and error, find what worked in our situation.

I had to work it out because people are unique!

Every one of us is different. There is not one solution or magic handout that meets every set of circumstances.

To every person I met after that, I found myself saying “Rhys has been diagnosed with autism” but then I would promptly add “but he is high functioning!”

It was a statement (although not realising it at the time ) I was saying to make myself feel better. But it was also a sense of denial, where I was trying to ignore my son’s unique characteristics and didn’t want to accept the full membership into “Club Autism”

But in that one statement, I was separating autism from society and confirming that it was something that we had just scratched the surface of and didn’t want the membership into!

But even worse, it was a slap in the face for those who had greater challenges than us – or did they? I hadn’t paused to consider others and the extreme variances across the spectrum, or that some of my own son’s characteristics would be far more challenging than others.

So I stopped.

I started to learn more about autism, and that it was OK. It was new and I had a lot to understand, a lot to digest. But more importantly, I removed the words ‘High Functioning’ from my vocabulary.

My son is autistic. He has challenges in areas of speech, communication and perceptive language, but he has strengths in maths, a photographic memory, cuteness and laughter.

So from that point forward whenever someone asked me where my son was on the scale of autism, my response was that he was autistic. Nothing else. No high. No low.

It sounded strange, I was suddenly not justifying where he sat amongst the other autistics. But when I paused to think about it, I asked myself, “When was the last time I was asked where I fitted on the Neurotypical scale?” When in general conversation had I been asked how good or challenged I was against my peers?

If I had to answer and say “I struggle with faces and names” people don’t nod and tilt their head to the side, and give me a sad caring face with a reply of “Oh I am so sorry!”

Of course they don’t! So why should we treat our children that way?

We are all unique with our own strengths and challenges. So let’s remove “High Functioning” from our vocabulary and just see each other for who we are.

My son is autistic, and we are learning what works as we get through each day. Just like every other parent. Just like every other child.

Let’s stop pigeon holing each other.

Let’s remove High Functioning from our vocabulary and just be unique.

Let’s just be ourselves.

#erasetheword

Autism Shopping

Bail Me Out!

January 23, 2021 AMe

I was put in jail today.

Let me start at the beginning…

It didn’t go well from the very beginning, as I helped Rhys into the car for our weekly shopping trip. “Here’s the shopping list” I said, handing him his list of pictures in the same way I do every week. But he had other ideas and with a returned response of “No!” he threw the list on the car floor, followed by, “It fall down, it fall down!”

I had already started to accelerate the car forward, so I pulled to the side of the road, stretched over and picked up the list, handing it to him once again. He took it from my hold, but immediately discarded it back to the floor. It was a game I wasn’t going to play, so I continued forward along the road, coming to the supermarket with a child slightly less happy than when we left.

“Rhys shopping” I said opening the door and taking his hand. He walked, although reluctantly, towards the trolleys, and climbed up onto the heavy goods shelf which we use as a trolley buggy-board.

All seemed to be going to the standard plan, as I pushed the trolley and my son forwards into the shop. It was semi-busy (medium if you want a good gauge of crowd limits) as I pushed up the first isle of fruit and vegetables.

“Rhys, apples?” I said, holding out the apples and then pointing to the little apple picture on his list.

I gestured him to move it across to the red ‘done’ section in the way he does every week, but Rhys turned his back on me, and collapsed to the shop floor, a full on protest against the shopping trip.

Even ignoring social distancing, the space for my fellow shoppers to meander around him was non-existent, so I bent down and lifted him up, but only after he let his tongue make contact with the floor for a good corona tasting session!

As we moved down each isle, I turned the trip into an episode of Supermarket Sweep. The bread got a battering at the bottom of the trolley, with the eggs somehow staying intact throughout the experience. The new game show experience was made more complex with constant lifting of Rhys from the floor, or immediate trolley abandonment, as he ran down isles and through gaps in the supermarket shelving.

I soon agreed with myself that I had enough items to consolidate into some sort of eating experience, and headed to the tills, with Rhys in a fireman lift over my right shoulder, and my left arm manoeuvring a semi-full trolley down the final isle.

People stared, but I was beyond caring. This was an experience I was about to just write off, and all I had to do was get past those tills in front of me and into my car towards home.

The end of the experience was so close, but Mrs Old Lady in front of me, was taking her time trying to work out the complexity of contactless payments, only adding to Rhys’ urgency to get out-of-the-shop!

Rhys ran through the tills and lay horizontal across the floor, blocking the exit to anyone keen to leave. He kicked off his shoes, each one flinging across the space, leaving a middle aged man, unsure how to proceed past the situation.

“Just go round him!” I shouted, having totally given up on any shred of dignity I had left. The man pushed his trolley, making sure not to roll over a foot or stray leg, and I just continued to place my groceries on the belt, knowing the quicker I did it, the quicker this nightmare would be over.

“One, two, three” suddenly came through the tannoy system. A voice I vaguely recognised, but out of context I just couldn’t place. Then I turned my head and saw the origin of the sound. Rhys stood on a chair at the end of the tills, the announcement phone in his hand, and his mouth moving in speech.

I let my shopping and ran towards him, hoisting him into my arms, returning the handset and taking one big breath. All this had to be over soon!

I started to place the last few items into the trolley, with Rhys secured safely on my hip.

“One hundred and sixteen pounds, please?” asked the kind cashier, “would that be cash or card?”
I pulled out my card, and putting it into the slot, entered the code. The screen immediately beeped and a message appeared saying “Card declined”.

I stared at the screen. There was money in my account, what was happening. I tried a few more times, and each time I was rejected.

“Do you have another card Ms?”
“Yes, but I don’t know the pin” I replied, starting to panic not knowing the options to get out of the situation!

I was ushered to the side, Rhys still on my hip and my trolley of unpaid shopping beside me. “I’ll contact the bank” I said, and through the banking app got hold of a lovely lady called Lidy via the chat.

‘To ensure this is not a fraudulent claim, please send us a selfie of you holding a form of ID’ she said via the letters entered across my screen.

Then my phone screen dimmed, and a low battery message flashed before me.

“Crap!”

I cut-off Lidy (she probably wasn’t human anyway) and punched the only number I knew into my phone, hoping I had enough juice to allow me my one phone call.

“I need your card” I blurted out. Then the screen went blank.

I could feel the sweat accumulating on my skin as my nerves took hold. I thought about removing my coat to cool down, but then remembered that I was braless, and it was not a sight I could present to the world, even though I had taken them through enough already.

As I suddenly looked to where Rhys was, I was once again taken aback to see him seated at an empty till pushing on some buttons which must have done something, but I had no clue what! So I once again hoisted him onto my hip, and stood waiting in hope that my saviour would arrive.

It took ten minutes. A long ten minutes, but my husband walked in with a card in his hand. He looked at me and smiled.
“You ok?”
“Yes, I’m fine” I blurted.
He then looked at Rhys, and then back at me. “Well done. I dont think I would have had the strength to hold it all together as well as you do. Let’s go home”

Handing over his card to the shop manager, he paid my bail, and we left with just a smidgeon of my dignity still in tact.

I might try a different supermarket next week!

🛒🛒🛒🛒🛒🛒🛒🛒🛒🛒🛒

Autism Life

A Tribe Worth Belonging

January 20, 2021 AMe

Lonely

That’s I how I felt!

It was the feeling of being left behind. The feeling of everyone else being part of a crowd that I did not belong to and could not belong to. We didn’t have the criteria to go along with the crowd. The crowd whose children were running around together, being surprised by new adventures, making their first friendships, talking and conversing with each other in a natural untaught way.

There are so many feelings that overwhelm you when you realise your child is not “the same” as everyone else’s. There are feelings of fear, the unknown, anxiety, hope, upset, stress, and sadness. But the feeling that trumped it all for me, in the beginning, was loneliness.

My group of friends who continue to be everything to me, handed me words of reassurance, “Everything is going to be ok” and “I am here for you” and “He will catch up”. These were the phrases they recited, in the way that every friend would do. My friends have continued to be there for me. They have celebrated our achievements, and they have been a shoulder to cry on when I have had no where to go. But they were also as knowledgeable in autism as I was at the time, when I was beyond clueless.

My friends went on outings together and sat on the side catching up with a cuppa and cheeky piece of cake. Their children ran around within their line of sight. They were probably having the normal parental stresses you would expect, like checking where their child was at all times, and concerns if they fell or lost their friends. But they looked relaxed and enjoying the world they lived in and the progression their child made, in how it was expected to be made.

I often sent excuses to these catch-ups. It was easier than trying to explain that Rhys wouldn’t enter the location they had planned. Or try and describe the meltdown he had experienced the week before, at the entrance, not even managing to get into the foyer. The failure I felt inside not knowing why or how to solve an issue I did not know existed. The embarrassment from people staring at me and me not knowing what to do to rectify the situation, with my main focus being on getting the hell out of there.

In the occasions that I could get Rhys into different establishments, I was not the parent sitting on the side sipping a cup of tea and talking about the latest gossip. I was in constant sight of Rhys. I would panic about him physically pushing a younger child, not because he was violent, but because that was how he communicated – physically. I would be trying to apologise to a parent who was appalled about how Rhys had approached their child, explaining something I actually had know knowledge or experience about. I was too vulnerable to stand up and explain, finding myself apologising and edging away, because I was broken and unsupported in the mist that surrounded me.

At this time Rhys did not have a diagnosis. Autism was a word I had heard but knew just that, the word. I knew none of its context.

I was alone in a world of confusion, and could not even start to imagine how it felt for Rhys.

My friend’s children continued on the recognised path of development, and we moved in parallel, at snails pace. We were extremely behind and didn’t have the stepping stones they had to progress. We just drowned in a world we did not understand or know how to navigate through. I didn’t know where to look for help or information and support.

I stayed behind closed doors for a long time. Battling through the process with paediatricians, speech therapists, psychologists, occupational therapists and ENT surgeons. Just to name a few.

I was alone. This was a norm I had never heard about, with everyone else leading ‘normal’ lives, with the remaining being part of a secret autism society I could not get the membership card to.

It was when I went on the early bird course lead by the National Autistic Society that I started to connect with other parents, just like me. They were just normal families with the same struggles as us and roamed the same places we did (there was no secret group who were hidden away – they were among us). I had found people who I could talk to. People who understood the complexities of autism – from a parent’s perspective. We laughed about things that I would never share with my ‘non-autism’ friends, because they just wouldn’t get it.

I call them my Tribe. A group who are there to support, fight and laugh together over things that other ‘normal’ families do, but also the other things that only we understand and get.

In the UK, 1 in 100 people are on the autism spectrum, and there are many more that are undiagnosed. If you include families in these figures, you are looking at 2,8 million people in the UK with a first hand experience.

You are not alone if you or your child is autistic. Walk down the street and you are guaranteed to pass at least one autistic person. Search famous people and there are amazing individuals who are have changed or who are changing this world in way a no Neurotypical person can.

You will already know someone with a link to autism. I know this because every person I have spoken to about my son has either confirmed that one of their family members are autistic or a close friend or colleague.

Autism is everywhere, and the feeling of loneliness I felt, was short lived. As soon as I lifted my head up and spoke about it, a whole new world opened up for me, and in turn allowed me to enter into Rhys’ world and help him and broaden it into mine.

We need to raise the awareness of Autism. We are not alone in this. We are part of this and part of a world that needs a range of different minds to move forward. Different doesn’t mean unable, different means flexibility, perspective and progression in different ways. Ways that can achieve amazing things.

👨‍🦱👨👳‍♂‍👩🧕👧🧒👶

A&Me