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Autism, Family, Uncategorized

2 Steps Back

Sawyer sailed through Year 3 with relative ease and for a minute there it looked like his additional support really had been a magic key that had opened the door to a calm and positive education.

As the summer term came to an end both Sawyer and his sister were eager to begin the six weeks of holiday that stretched out in front of them. I remember how that felt. Relieving yet at the same time exhilarating. The buzz of excitement running through your little body as you woke to realise that you could stay in your pyjamas and watch cartoons all day. All day, every day. For what seemed like an eternity.

Sawyer loves being at home. If he was given the choice I believe fear he would never leave the house again. And when you stop to think about it, it makes perfect sense. His home is certain, and safe. In his home the furniture never moves around, his bed is always where he left it, and the granola bars are safely stashed away in his favourite kitchen cupboard. So as a successful school year came to an end and the summer holidays began I too was filled with a sense of excitement, knowing I would take time off work to enjoy being a family, making memories together as my children enjoyed a welcome break from school.

What I had failed to see, or perhaps tried to ignore, is that to Sawyer, those feelings of excitement and anticipation bred uncertainty and fear. The long stretch of ‘free time’ came with a lack of routine, which he relies on to outrun his anxieties and navigate his way through each day feeling protected. The result of those basic foundations being moved was catastrophic, and within days of the summer holidays beginning I started to realise that this break from school was not going to be a break at all.

What were once lazy days inside the house now revolved around Sawyer’s anxieties, filled with his need to ensure all the light switches matched, and his insistence on turning a light on and off 4 times before it was allowed to stay on. Time spent out of the house, even if only for an hour to play in the park with friends, became more and more difficult. Meltdowns of a scale we had not seen for many months not only returned, but became more frequent as time went on, going from weekly to daily in a short space of time. There was only one day of respite throughout the entire summer holidays, when as a birthday treat, I took Sawyer to Thomas Land. There, he was happy again. There, his anxieties disappeared. There, he felt safe.

Sawyer has been back at school for several weeks now and settling back in to school life has proven as difficult as settling in to the summer holidays. It feels at the moment as though last year never happened, and like autism has decided to take firm grip of his anxieties all over again. Meltdowns are coming daily and are now harder to deal with because he is bigger, stronger, and more difficult to control. On top of autism he is also battling the hormonal changes of any 8-year-old boy, and trying to differentiate which issues are which is exhausting.

I am trying my hardest to stay positive, but every waking moment fills my brain with thoughts of what we can put in place to help him, and when I sleep at night I dream it too. Because when Sawyer sleeps next door, autism finds me instead. The anxieties become mine to face, to help and to heal.

I suppose what I am realising is the most difficult thing I’ve had to face so far. That this might just keep getting worse.

 

And that there is nothing I can do about it.

 

 

Autism, Family, Uncategorized

Pieces of Eight

Dear Sawyer,

Today is your 8th birthday. And what a year you have had!

At school, this year has been a real turning point for you. You have gone from not wanting to go to school at all, to winning an award for effort in the end of year assembly! You seem to have found a way to unlock all the subjects that were stuck inside your head, and you now access them and use them to do your schoolwork. Everybody has been incredibly proud of you.

You are such a funny boy, Sawyer. You make everybody laugh with your cheeky expressions and different accents. Your choice of uncommon words is mesmerising, and we love the way you are learning to choose words that will surprise and impress people. Occasionally some of those words are a little… unsavoury. But those are few and far between… and probably Dad’s fault…

😉

At the moment you are very interested in Thomas the Tank Engine again, and you play with trains a lot of the time. You watch Thomas episodes on YouTube, and you even make your own videos to upload to your very own channel! You tell me that you still like Super Mario and Spongebob, but that your Thomas trains are very precious to you – and that there will be a tiny bit of your heart that will love Thomas forever. I hope that is true, Sawyer. Because he will always be in my heart too.

You are beginning to understand how to enjoy time spent with friends now, although you still prefer time alone. And that’s OK. I’ll be honest – at this point you’re generally not a massive fan of your sister (poor Piper – she idolises you!), but I know that will change over time. And although you find her annoying sometimes, you do love her, and you want to protect her. Recently when she told you that somebody wasn’t nice to her in school, you told her to point them out in the lunch hall so that you could tell them to be nicer! You are a very kind-hearted boy, Sawyer. And that part of you continues to grow.

Sawyer, I hope the years that come for you will be as amazing as this past year has been. I hope you continue to enjoy subjects in school (and perhaps beyond), find hobbies that give you joy, and that your relationships with those close to you remain as strong as they are today. You are so well loved, Sawyer. And you love freely too. I have a feeling that no matter where you go or what you do, you will bring light and laughter to the lives of everyone you meet.

Sawyer. Many parents hope their children will one day change the world for the better, but I don’t wish that at all. I don’t need to.

Because you already have.

Love,

Mum xxx

Autism, Family, Uncategorized

Blame: The Husband Diaries

As Lloyd’s story starts to unfold between us, I am surprised by how easily he can access his emotions when I ask a direct question. It occurs to me for the first time that although he rarely offers out his innermost thoughts, they are in fact very close to the surface.

The conversation continues to flow between us as I begin to steer away from denial and into deeper waters. I ask him if he remembers how he felt once he finally came to terms with Sawyer’s diagnosis, and accepted that autism was here to stay. As he pauses for thought, a vision of Sawyer screaming in a highchair appears in front of me. And I’m almost certain Lloyd is looking at the same thing.

“I suppose I started to blame myself”, he manages.  And he looks the other way.

~

When Sawyer was around 18 months old, Lloyd was made redundant. He very quickly moved in to different employment, but initially the new job was only available for 2 days per week, which meant we suddenly found ourselves reversing the roles we had established since becoming parents: I increased my working hours to counteract the financial shortfall, and Lloyd became Sawyer’s primary caregiver.

It is difficult to explain how it felt to be around Sawyer when he was that age. Taking him out was rarely fun because all he wanted to do was run as far and as fast as possible, putting yet another spotlight on how unusual his behaviour was compared to his peers. But staying home alone with him was difficult too. Sawyer didn’t play with toys, or clap along to music. And he didn’t want you to play, laugh, or sing songs with him. In fact, Sawyer barely interacted with us at all. Because Sawyer was in a world of his own.

Long, silent days at home with him would be broken up with scream-filled mealtimes. Sawyer was unable to sit still at a table and therefore we used a highchair, which he hated with a vengeance. He also hated food, both texture and most tastes. Airplane sounds and elaborate motions with spoons were pointless because he had no idea what we were doing or why. All he seemed to be sure of was that he needed to escape. And his need to escape became the theme of every single day.

I can’t begin to tell you to what extent all of the above makes you feel like a terrible person, let alone a terrible parent.  There aren’t enough words to describe the sense of failure that suffocates you as you sit in complete silence, not engaging with the child who sits just in front of you.

Silence.

Because after a while, you just stop bothering to speak.

~

After a few moments, Lloyd looks back at me and takes a deep breath. He tells me that Sawyer’s diagnosis had made him question the time they had spent together, wondering if things could have been different if I had been the one to stay at home. For a moment he looks sad, but then out of nowhere he smiles, and I recognise it. It is the smile of someone who has overcome an anxiety and is able to look back on it as fiction for the first time.

I put my hand on his knee and mirror his smile, realising that it has taken up to this very moment for us both to accept something so vital to our future happiness.

 

It was never anybody’s fault.

Autism, Family, Uncategorized

Denial: The Husband Diaries

I sat on the end of the sofa and blinked slowly as my tired eyes followed Lloyd around the room.

It had been only a few hours since Sawyer was given a formal diagnosis of ASD. Both of our children were in bed and my mind was still buzzing with it all – filled to the brim with an odd mixture of relief, sadness, confusion and exhaustion. My head ached. My heart felt heavy.

Our son was autistic.

I silently waited for Lloyd to sit down so that we could go over the day’s events and talk about what had happened. Maybe cry a bit? I didn’t know. I rolled my own thoughts and feelings around in my brain, trying to put them in some sort of order  – trying to understand them. It was the first time either of us had been through anything even remotely similar to the situation we found ourselves in – but we were at least, in it together.  We could support each other, I comforted myself.

After what seemed like an age, Lloyd sat down adjacent to me. He briefly felt around for the TV remote, and as he picked it up he happened to catch my eye. He smiled a familiar smile.

“What’s up?” he asked.

As if nothing had happened at all.

~

 

When Lloyd and I sit down to discuss how we should begin telling his story, I have no idea how the conversation will flow. I know he is keen to get his story out in to the world, but he has never been much of a talker, and his feelings are often difficult to extract. Frankly, he finds these types of conversations incredibly uncomfortable.  I suggest we start right at the beginning, we both take deep breaths – and we jump right in.

I start by asking Lloyd if he can remember the first time autism was mentioned in relation to Sawyer. He looks around as though he is searching for something, and although I don’t look, I can see in my peripheral vision that he is wringing his hands. He thinks more deeply than I expect, and when he eventually starts to speak, his voice sounds cracked and awkward. He carefully admits that he can’t remember the first time autism was mentioned,  but that what he does remember is that when Sawyer was very young, I would call him crying, sobbing down the phone telling him that something wasn’t right and that I didn’t know what to do.

Sawyer was less than a year old when those phone calls started, he tells me, and again, he looks sad. After a short pause he then makes the incredibly honest and brave admission that he thought I was overreacting, and that I was trying to draw too many comparisons between Sawyer and his peers. He explains that Sawyer was his only frame of reference, adding that if Piper (our youngest) had come first, he would have seen the differences in Sawyer’s behaviour very early on. He tells me he feels guilty about that now, and wishes he had been more supportive.

We sit in silence for a while, taking in everything that has just been said. I think he surprised himself with his words. I suggest we talk a little bit more about denial and ask him when he thinks he fully accepted Sawyer’s autism. He knows immediately, without pause, and he tells me it was the summer of 2017, which was 4 years after Sawyer was given his formal diagnosis.

~

In the summer of 2017, while the rest of us hid away from the stresses of everyday life in a luxury Spanish villa, Lloyd felt unable to do the same. It was no secret that he had been going through an incredibly difficult time, but we hoped a holiday would do him good, and Lloyd had hoped the same. Alongside many personal struggles, it was coming up to the 1-year anniversary of his good friend’s untimely death, and it had affected Lloyd in a much bigger way than any of us had expected. The grief was as strong as it had ever been, and time away in the silence had backfired, forcing him to think about things with more clarity than ever before. Included in this, was Sawyer’s challenging behaviour. Which suddenly stared him directly in the face, in a situation he was unable to escape.

~

Back home, Lloyd explains, he only saw snippets of Sawyer’s unusual behaviour – both before and after diagnosis. He saw the same issues and problems day in and day out, and had learned to cope with them as if they were normal. But suddenly, secluded, spending 24/7 in a villa with Sawyer, he could no longer pretend that autism didn’t exist. It was everywhere. In the noise of the airport, in the heat of a hotter-than-usual country, in the unfamiliar food, in the temperature of the pool, and in the mattress he slept on. Autism had followed us.

And that, Lloyd tells me, is when he realised autism was part of our family.

 

And that it would never go away.

 

 

Autism, Family, Uncategorized

Autism Dads

Fathers of autistic children are often lost and forgotten. Their feelings are not regularly discussed, their voices not heard, and their stories never told. If you were to google the words ‘autism blog’ you would discover pages and pages of words written by mothers, but there are comparitively very few that tell stories of what life is like to be the father of an autistic child.

Over the next few posts, and with his permission and guidance, I am going to start telling my husband’s story. Exposing the ups and downs of living life as Sawyer’s daddy, hoping to initiate discussion, incite questions and tear down barriers of communication.

If you are an Autism Dad reading this post and feeling lost, anxious and unable to speak out, hang tight. Drop me a message.

I see you.

Autism, Family, Uncategorized

Confessions

Sawyer is an incredibly endearing and often hilarious 7-year-old. He is kind, inquisitive, outgoing and incredibly handsome.  He faces the challenges autism throws at him with admirable determination. The meltdowns, the sensory overload that fills his days, and his lack of special awareness are an example of the threads that tie Sawyer and autism together. Forever. They are traits that have always existed, will always be there, and that he simply cannot help.

But that doesn’t make them any less annoying.

I know I know, but hear me out.

Someone recently said to me that Sawyer is lucky to have a mummy who understands him so well, and who does so much to make him as happy as possible, despite his disability. And to an extent I suppose she was right. I do educate myself. I take time to think of what is best for Sawyer, and I never, ever stop fighting for him. I write about the battles we face, the obstacles we overcome, and my hopes for his future, because I want to spread awareness and contribute towards building a more inclusive future. But what I haven’t ever written about is that just because I work hard to understand my son’s additional needs, doesn’t mean I always get it right.

On Monday of this week, Sawyer suffered autistic meltdown of catastrophic proportion. It isn’t something I’ve seen in many months, but a change to his normal school routine sent him into a spiral of confusion and mistrust that we are still feeling aftershocks of today – 5 days later. I understand the reasons why he found school difficult this week, and I certainly did as much as I could to limit the damage. But let me tell you this: Just because I understand the reasons behind it all, doesn’t mean it can’t fuck up my day.

Just because I fully sympathise, doesn’t make it easier to face. In fact the opposite is true, because when you understand the reasons fully, and you still can’t suppress the feelings of frustration and annoyance, what follows every single time – is guilt.

~

As a treat for both children today, we planned a family day out to a local animal rescue shelter. Our daughter is desperate to get bunny rabbits. She’s named them, knows where to buy them, has decided which type of hutch they need, and has very matter-of-factly told us that our cat will be fine with it because we had a bunny rabbit before (“And once, he even slept in the cage because Mummy didn’t know he was in there and she locked him in!”).

Yes, thank you, Piper.

It was clear Sawyer wasn’t coping from the second we got out of the car. The weather here in the UK at the moment is sweaty and close. It isn’t something we are used to (as you’ll find out from any chatty cashier) and for Sawyer it is even more of a discomfort. Whereas I wipe the beading sweat moustache from my upper lip and fan my face with random pieces of paper, Sawyer starts to spin in circles. He starts to get clumsy, drop things, seek out sensory stimulation by getting as close to me as possible, even if it means standing directly in front me whilst I’m walking in a straight line, just so he can feel the resistance when we crash. Today, the smell of animals was too much. The sounds were all too much. The heat was too much. And it is always, always heartbreaking to see him like that.

But yes, you guessed it, sometimes it is annoying.

I am a mum of two small children, with an ever-evolving career, a busy schedule, and only so much patience. I work hard to understand autism, and I certainly do my best to make Sawyer as happy and comfortable as possible, but in day-to-day life there really is only so much you can do. You cannot have all the answers. You cannot think about autism every second of the day and block all other experiences to deal with just one. I have another child. I have other responsibilities. I have other thoughts. And sometimes, I’m just fucking knackered.

So this post goes out to all parents of young children, whether they are autistic or not. If you’ve poured yourself a massive glass of wine and are currently sat telling yourself what a bad parent you are, and wondering if maybe your kids weren’t that bad after all:

You’re doing your best.

And they probably were.

Autism, Family, Uncategorized

Happy Meal

After school one day, I drove my children to our local Macdonald’s as a special treat. There was a time not long ago when I didn’t think Sawyer would ever feel the childhood elation of a random trip for fast food, and so each burger they consumed was as much a delight for me as it was for them. Not wanting to risk the bustle of a busy restaurant, we took the drive-thru option and I listened to them rifle happily through the boxes as we made our way home.

When we arrived at the house they scampered quickly inside, leaving me trailing behind with a multitude of bags, books, lunchboxes and jackets, as standard after-school procedure. I made my way through to the kitchen and put everything down, cleared paperwork from the table and helped Piper open her orange juice. A few moments later I looked around and wondered what was taking Sawyer so long to make his way through to the kitchen. I called out for him twice, but as Sawyer often doesn’t hear me over the volume of his thoughts, I went to check he was OK. I walked through to the hallway and as the stairs came in to view so did my gorgeous son, sitting on the fourth step still smartly dressed in his school uniform, with his shoes neatly placed by his feet. He didn’t notice me arrive, even though I was stood directly in front of him, and he didn’t look up. His new toy was sat to his left and he was staring intently at it, whispering something rhythmically under his breath before taking the last couple of mouthfuls of his burger. I asked him if he wanted to come and eat with us at the table but he politely declined. When I explained that he might feel a bit more comfortable at the dinner table, and that we would like to eat with him, he eloquently expressed his thoughts in a way that left me both sad and happy. Bemused and yet completely sympathetic:

“I just please want to eat my dinner alone in the peace and quiet” he said, without looking up.

There is no instruction manual to tell you which autism-parenting battles to choose and which to quietly step away from. But in that moment I knew that I should leave him alone to eat.

It wasn’t the first time Sawyer had expressed a strong desire to be alone. There have been countless times when he has chosen to sit at a different table at softplay, in restaurants and pub gardens. And I suppose to the outside world it must be a perplexing sight, to see a young boy sitting on his own, with his family seemingly ignoring him from the next table. But don’t get me wrong – when he does want to integrate with us, and join in the family meals and games – we celebrate it thoroughly and hope each time that it’s the start of a new way of life for us. But equally, we are raising Sawyer to be aware of how autism affects his own ability to function, and above all else to be able to ask for help. When Sawyer refused to eat with us that day, he wasn’t being rude, disrespectful or deliberately unkind – he was simply expressing his instinctive urge to be alone, and it would have sent him the wrong message if I had denied him that right.

I kissed Sawyer on the head and I went back to the kitchen to digest what had just happened. I was proud of him for his words, but I would be lying if I said I wasn’t saddened that he felt that way to begin with. It can be difficult not to take these things personally, even when I know he means no harm. I wanted to eat dinner as a family, and watch my children enjoying the treat I had bought for them, and once again I found myself angry at autism for taking away a simple family pleasure.

I sat at the dinner table, chatting with my daughter, trying hard to ignore the feeling of guilt that had started to build up in the pit of my stomach.

After all, I had just left my son to eat his dinner alone on the stairs.

 

Alone.jpg

Autism, Family, Uncategorized

The Bigger Picture

The emotions that run through me when I watch this old video are so conflicting.

I’m filled with love. It seems like forever ago and also like yesterday. I remember those pyjamas, the new baby smell, the sleepless exhilaration that came with becoming mother of two children.

But I also remember the feeling in the pit of my stomach, knowing that something in Sawyer’s behaviour wasn’t quite right. That somehow my journey through motherhood was going to be a little bit different.

This video encapsulates the struggle we faced with Sawyer’s diagnosis. He was adorable, funny, happy and energetic. His sensory-seeking quirks were endearing and lovable. And weren’t obvious all of the time.

This snapshot of our life shows a happy and excited boy who loves his baby sister. And that was how the health visiting team and the GP saw him. They saw these individual moments and could not see the bigger picture. They had all the jigsaw pieces but they couldn’t see the puzzle.

If you are at the beginning of your journey with additional needs, stay strong. You aren’t losing your mind.

I believe you.

 

Autism, Family, Uncategorized

New Beginnings

I’ll never forget the first time Sawyer dropped a mince pie, picked it up, dropped it, picked it up again and placed it onto Santa’s tray.

By the time his sixth year rolled around I was finally able to tell people that Sawyer was starting to get excited for Christmas. Although it happened far later than most of his peers, eventually Sawyer’s concentration began to improve, his ability to understand instructions developed, and he started to speak in short, sharp sentences. With all of those things came his understanding of Christmas. But autism is a fickle sod. And often as we begin to see developments in one area, further difficulties arise in another.

Back when Sawyer was 2, the holidays (although hard work for both him and us) were cushioned by afternoon naps, and softened by early bed times after tiring days. When he was overwhelmed he could be convinced in to a buggy and taken for a very brisk walk in the cold. He could be given a cup of milk, distracted with chocolate, or thrown up in to the air for giggles. At the time those processes still felt like hell, since everyone else’s angels seemed to be sitting nicely on laps and watching The Muppet’s Christmas Carol, whilst Sawyer was sticking his finger in to the Christmas candle and running headlong in to the patio doors. But we had obvious solutions, and temporary quick fixes. Sawyer never seemed to be in distress back then, he just seemed… well… hyper.

Although Sawyer’s love for Christmas has grown rapidly over the past 2 years, at the same time so have his intense sensory issues. Now 7, we can no longer distract him with a brisk walk, and we certainly can’t throw him up in the air. Finding ways to help him cope with Sensory Processing Disorder is a long, difficult and ever-changing process that we will continue to battle with over the next few years and beyond. High-functioning autism takes away with one hand, gives back with the other, and then kicks the chair clean out from under you.

After a lovely quiet Christmas Day at home, on Boxing Day we packed our bags and were ready to visit family a short drive away. Knowing that Sawyer finds large gatherings difficult, Mum and Dad cleared an entire room in their house for him, so that he had his very own safe space – somewhere for his trains, and somewhere to retreat to if he felt overwhelmed. In that room was a cracked window so he could stay cool, his IPad so he could indulge, snacks to save him from running out of energy, and water to remind him to drink. To our delight when we arrived, Mum and Dad had added a sign to the door that said ‘Sawyer and Thomas’, and within a few moments the room was filled with exactly those things.

I have learned so much over the past few years living with my autistic son.  I have learned to plan everything I physically can, and let the rest unfold as it will. During the holidays that means accepting it is okay to do things our way, even if tradition dictates otherwise. Sawyer did not eat roast dinner with us on Boxing Day. Instead, he sat in the room next door, with the lights low, his ear defenders on, eating a meal of his choice (turkey dinosaur in a bun) and watching Thomas tutorials on YouTube. It is something I fight with every day, finding the balance between keeping Sawyer involved in our daily lives, whilst also understanding that being alone is often his happier and safer option. Yes, it makes me a bit sad when he tells me he wants to be by himself instead of joining in with us all, but shouldn’t we all be given the opportunity to feel safe and content during the holidays? Screw the old traditions, we’re starting our own!

I’ve never really bought in to the idea of a fresh start for a new year, but today I’m practically waving £50 notes at it. 2017 was not the easiest year for us. We lost family members, and we mourned the loss of friends. Sawyer’s EHCP process took more of an emotional toll on me than I had expected, and all of this happened alongside the normal busy schedule of working parents with two young children. But today is New Year’s Eve. We survived the year, and we are still strong. Tomorrow will mark a fresh start for our little family.

And thanks to autism I will be able to see in the new year with my restless son snuggled up by my side.

 

……

Wishing you all the happiest adventures for 2018.

Happy New Year.

 

 

 

 

Autism, Family, Uncategorized

Stolen Christmas

Then he growled, with his Grinch fingers nervously drumming,
“I must find some way to keep Christmas from coming!”

 

When I was pregnant with Sawyer and I looked forward to the experiences parenthood would bring, Christmas was high up on my list.

Growing up, I loved Christmas. I remember racing home from school on December afternoons, desperate to be the first one through the front door so that I could switch on the fairy lights.  I remember sitting on the top step on Christmas morning, waiting for Dad to put on his dressing gown, pleading with him to hurry up so that we could see if Santa had been. If I really stretch my memory, I can still remember unwrapping my very first Girls World, which I promptly drew all over with a brand new felt tip pen (honestly, Mum – it came like that!). Of course it wasn’t just about the presents. My younger sister made that abundantly clear one year as she unwrapped a brand new set of Scooby Doo threads, thrust the box in to the air above her head, and squealed with glee “OH YESSS! I GOT WIRES!!!!!”.

The magic of Christmas stayed with me well in to my adult years, and I was impatient to pass it on to my own children. Sawyer was only a few months old for his first Christmas, but it didn’t matter because I was already busy planning his second in my mind. I imagined taking him to see Santa at the local garden centre, reading him festive stories, and teaching him all my favourite Christmas songs. But what I hadn’t planned for was autism. And what I didn’t know was that for us, those simple Christmas treats wouldn’t happen for many years to come.

Every year in the run up to Christmas I would be asked if Sawyer was excited, and every single time it felt like a jab to my heart.  Because as much as I wanted to say yes (and mean it), it simply wasn’t true. Sawyer wasn’t excited for Christmas because he had no idea what Christmas was. He could not yet speak because he could not yet understand, and he wasn’t interested in books or songs because he could not yet focus on either. As I watched the annual wave of grotto pictures wash over my social media I told myself again that next year would be our year.

By the time Sawyer’s fourth Christmas rolled around, his little sister was a year old. She spent most of the festive period clapping along to Christmas songs, smiling at her own face in baubles, and unwrapping presents from beneath the tree, particularly if it was 4.50am. On Christmas morning, textbook fashion, she threw her new toys to one side and sat playing intently with the boxes. Meanwhile, Sawyer gave his still-wrapped presents the side-eye and proceeded to run in circles around the kitchen table. I began to wonder if he would ever understand Christmas, and if we would ever be able to show him how magical it could be.

In our house, it wasn’t the Grinch who stole Christmas.  It was autism.

 

To be continued.