There are times when you can forget that Sawyer is autistic, particularly when you are around him a lot of the time. But whereas when he was 2-years-old you could disregard or give reason to the differences in him for maybe an hour at a time, these days it comes as tiny snippets. Fragments of life. Slivers of experience.
Those moments, no matter how brief, can often give cause for parental doubt, particularly when acknowledged by somebody else. You see, albeit with good intention, the world is and always has been desperate to make Sawyer ‘better'. Desperate to play down his symptoms, to call his meltdowns ‘misbehaviour’, and tell me that boys will simply be boys. If you listen to enough people tell you that your child doesn’t seem autistic, you do start to question your own sanity. It’s not that it strips away your voice, but those comments certainly make it harder to speak up in future. The words you want to say still exist, but are pushed inward. Swallowed by doubt.
The first step in finding a new school for Sawyer was telling the Local Authority that we wanted to consider specialist schooling. At this stage they referred the case to a panel meeting, where the situation would be discussed and an initial decision would be made. The panel meetings in our area run every 3 weeks, and as luck wouldn’t have it, the next panel meeting was approximately 2.9 weeks away. Knowing the system as we do, and due to my own fierce impatience, we set about looking for the right school, pre-empting that the process would take some time, and wanting to get things lined up in advance. Autism aside, it’s just how I like to go through life. I don’t know where it comes from, but I don’t like surprises. I like research, logic, and <del> GETTING MY FUCKING WAY </del> planning.
One week and several school visits later, we had found The School. It had clicked in to place immediately we got there, and suddenly we could visualise Sawyer in a setting other than the mainstream school we had grown so used to. Suddenly, again, there was hope.
I emailed Sawyer’s caseworker on the same day we visited the ‘new school’, and asked to provide my own document of evidence that would go to panel. I didn’t want them to simply agree to investigate specialist school for Sawyer – I wanted them to agree to letting us apply to our school of choice. All at the same time. The panel meetings occurring at 3-weekly intervals meant that if they weren’t convinced of our case at the initial meeting, we would have to wait another 3 weeks to put the case forward again. It woudn’t do. By this point it was already late January and although that sounds a lifetime away from the next school year, in reality it’s more like 6 months of term time, which meant we would need to move fast if we were going to secure a place in time for a September.
2.6 weeks later, we got the news we had hoped for, and our school application was in before I’d even hung up the phone. That’s some sort of reverse exaggeration on my part. The application had actually gone in 2.6 weeks beforehand, which is frowned upon but not against the rules. And that’s something you find out if you happen to trawl Local Authority guidelines as a hobby, which I just happen to do. Hell - in fighting for a place at a good school, 2.6 weeks is a head-start. A short cut. And one that we were sure as hell taking.
The admissions process with the school is one I’ll talk about at a later date, but it was lengthy and anxiety-inducing for all of us. Sawyer was involved in the process throughout (although saved from the bureaucracy and as much of the anxiety as possible) and I think he had actually realised that his school wasn’t working before we had. He didn’t disagree with looking at a new setting, or with the decision about which school was the right choice. He simply understood and accepted it, like some sort of emotional genius.
Nibbling anxiety is something I’ve learned to cope with as a parent. It's what we do isn't it? We accept anxiety and we learn to balance it, hopefully raising well-balanced, happy children in the process. But self-doubt left me soaked to the bone yet again when we got the official acceptance letter and start-date from the new school. Suddenly everyone believed me. My husband. The psychologists. The teachers. The local authority. The specialist school. And most importantly – my son.
It felt like Diagnosis Day all over again. The fight was over.
One of the most incredible parts of being an autism parent is having to make life-changing decisions before 10am, and then spend the rest of the day pretending it never happened.
I left Sawyer’s EHCP meeting in a baffled haze at around 10.30am and made my way in to work for Christmas lunch.
"Mainstream school isn’t working anymore"
The words floated around my brain, but never settled anywhere. Not that I didn’t believe in them – I did – it was just that they hadn’t yet been considered or discussed. They belonged only to me. The thoughts, the words, the decision. I couldn’t ignore the fact that they suddenly existed, in a place they hadn’t existed before.
On the approach to lunch I banished autism, and the sense of impending battle(!), to the deepest corner of my mind. And in order to keep them there for a while, I did the first things that came to mind that might help. I put on a brave face, I greeted my colleagues with a smile, and I got drunk. It probably wasn’t until 3 or 4 days later that I sat down with my thoughts and allowed them to find a home. I replayed the meeting in my mind, plucking out the moment when the course of our future had been irreversibly changed. As I had looked around the room that day, I realised for the first time that the people there already felt as though they had tried everything. It wasn’t that they weren’t willing to try, and it wasn’t that they hadn’t taken any steps to help. It was a look of defeat that sank in to me. A look that told me the options they felt were open to them had already expired. As the conversation ran on around me, I zoned out in attempt to find my own solution among the voices.
It is usually impossible to find your own parental thoughts and words when you are surrounded by education and health professionals. It DOES NOT MEAN that your thoughts and words are any less important – it simply means you have to try harder to find them. And harder still, to pull them out and voice them.
In my own head for a few moments (possibly even with my eyes closed?!) I had attempted to strip away the white noise and think about what exactly Sawyer would need in order to cope with mainstream school. The answers found me easily, then.
1. A safe space.
Impossible. There are 30 children in his class, and 30 children in every other class. There simply is not SPACE for that type of set-up, no matter what funding we’ve secured, and no matter how hard we try to find a quiet space for him.
2. A far more calm and quiet environment. Basically, far fewer children around him.
Impossible. For many obvious reasons.
And that had been that. That was the moment everything changed. The moment I realised we would be finding a new school. The moment I knew I needed to get drunk later that same day.
After replaying the meeting in my head, and finding the moments I’d been searching for, I took a deep breath, and voiced them to my husband for the first time. He, as always, listened to my reasoning and trusted my instincts implicitly. He’s a pain in the arse if you want him to clean the bathroom, but he’s pretty awesome when it comes to understanding Sawyer’s needs. It’s the way round I’d prefer on the whole, although the bathroom simply doesn’t clean itself.
Later that day I sent an email to the school, detailing the decision. I knew they would agree, and moreso, I felt they would be relieved, which is a bittersweet feeling that I’m sure most SEN parents can understand. I subsequently sent emails to several specialist schools (local and otherwise), asking for further information, prospectuses, and how to arrange visits.
And then, for what seemed like the millionth time since autism entered our lives, we waited. ... See MoreSee Less
Raising an autistic child often feels like a battle you might never win.
And I’ve found that the best way to survive is to break down the difficulties in to smaller chunks - divide and conquer, so to speak. The only trouble with it is that the battles come fast and frequently, leaving little time to recover in between. And the more battles you face, the more tired you become.
A couple of weeks before Christmas, Sawyer’s annual review meeting was held. This is where I meet with teachers and specialists to review his EHCP funding and decide what is working for him in school, and what needs to be changed. I wasn’t feeling positive about the meeting because since Sawyer had gone back to school in September life had become increasingly difficult, and he didn’t seem to be progressing at all. That said, I have worked hard on my ability to think logically about potential solutions for Sawyer’s problems and suggest suitable remedies. I wasn’t feeling positive about the meeting, but I certainly wasn’t worried it couldn’t be fruitful.
The planning meeting happened to be scheduled on the same day as my work’s Christmas event. I joked with myself that the fun of eating and drinking with friends would either help me to celebrate a positive meeting or commiserate a terrible one. But what I hadn’t realised was that the meeting would leave me with a realisation so pivotal to my family’s future that it would take a lot more than a lunchtime tipple to help move my mind elsewhere.
The planning meeting began with every horrible moment of Sawyer’s school life being stretched out in front of me, poked at and dissected. Problems were thrown on to the table like monopoly money, yet nobody seemed to have any answers. My mind raced, trying to keep up with the pace of what was going on around me, needing to think rationally about my replies, but not having time enough to go through that process in my head. Whilst I dug hard to come up with a solution for the last problem, the next one had already been identified, and was already being discussed.
I stared down at my hands, clasped together in my lap. I systematically stroked each bauble-painted fingernail as the conversation continued around me for what felt like a lifetime, but can only have been a few seconds. I must have blinked heavily then, because when I looked back up something felt different. I was in the room, and I was outside of the room, too. I could still hear the concerns but suddenly they were no longer important.
With all the noise and chaos going on around me, a moment of clarity ensued.
I try hard to ensure Sawyer has the same opportunities as other children (particularly his sister), but at what point do you accept that your child might just want to be left alone? That they're happier indoors?
Lloyd and Piper went out tonight, to spend some time with friends. And Sawyer and I stayed home.
I try to gently nudge Sawyer in to a 'normal life' - but I didn't want to end a year... and start one.. with a meltdown. I have my limits too. And you know what? It's not always about Sawyer. Our whole family has to exist.
It's not the New Year's Eve I ever expected or intended to have once I'd started a family. Growing up, we were always together - it was important to always be together. And I guess that's what I wanted for my family too.
But you know what? Just because it didn't work out that way doesn't make it bad. Or wrong.
Sat quietly watching my son drink juice from a pineapple was pretty fucking lovely, actually.
Autism strips away a lot. N doesn't do xmas, he struggles with presents, expectations, changes in routine. This year I watched my nieces rip open their present whilst screaming in delight and I felt sad because of what I had missed out on with N (selfish I know).
Here is to 2019 and whatever it brings for our amazing ASD & NT children xx
‘Twas the night before Christmas, when all through the house Sawyer could hear everything – a clock ticking; a mouse The stockings weren’t hung by the chimney with care They were straightened obsessively, so almost thread-bare
His sister was nestled all snug in her bed, While the world danced around in Sawyer’s head. And mamma in her tired haze, and dad with nervous frown Waited downstairs in anticipation, to see if he would ever slow down
When out on the lawn there arose such a clatter Sawyer sprang from the bed to see what was the matter Away to the window he flew like a flash Any harder and the glass would have certainly smashed
The moon on the breast of the new-fallen snow Made too many shadows on objects below There was a miniature sleigh, and eight tiny reindeer Sawyer didn’t see – he was already nowhere near
With a little old driver, so lively and quick I knew in a moment it must be St Nick More rapid than eagles his coursers they came And he whistled, and shouted, and called them by name!
And as he began to call his reindeer I quickly placed headphones on Sawyer’s ears The shouting was too much, and the notion was scary That man was too big, and ever so hairy
As dry leaves that before the wild hurricane fly When they meet with an obstacle, mount to the sky So up to the house-top the coursers they flew Sawyer could cope no more, he began to fly too
And then, in a twinkling, I heard on the roof The prancing and pawing of each little hoof Praying it would stop, and turning around I saw poor Sawyer rocking back and forth on the ground
He was crying and shouting and pulling his skin The sounds and the lights were too much to take in A bundle of gifts he had flung over the place And he looked like he needed some time and some space
His eyes-how they once twinkled, his dimples once merry His cheeks now like roses, his nose like a cherry His face was contorted with confusion and fear The same as it had been the same time last year
The stump of a pipe Santa held tight in his teeth As he gazed through the window, his face through the wreath He saw Sawyer there and his eyes grew broader It all made sense now – sensory processing disorder
He was lovely and kind, a right jolly old elf And I was relieved when I saw him, in spite of myself! A wink of his eye and a twist of his head Soon gave me to know I had nothing to dread
He spoke not a word, but went straight to his work Quietened the reindeer, then turned with a jerk And laying his finger aside of his nose He dimmed all the lights, and up he rose!
He sprang to his sleigh, but without even a whistle Away they all flew like the down of a thistle But I heard him whisper, ‘ere he drove out of sight “Happy Christmas Sawyer, and to all a good-night!” ... See MoreSee Less
Have you ever read this poem? Very poignant!
Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Kristie Gibbons & Marie Supan Ison big shout out to you Mummas too!! 😍💕😘
4th in the Happy Sawyer series By Nikki Mann I suppose I don’t think of Sawyer as autistic any more frequently than I consciously acknowledge that he has blue eyes, or that his 3 year old sister whinges for most of the livelong day. So when I put his school bags on the same cushion of the settee every single morning, I don’t really think much of it. [ 1,452 more word ] the-art-of-autism.com/awetism-when-being-weird-is-awesome/
Friday was school disco day, and to our surprise Sawyer said that he wanted to go.
So dressed as Woody, and filled with excitement, he kissed me on the cheek and left the house with his dad in tow.
But by the time they arrived at the school a few minutes later, Sawyer's excitement had turned to anxiety and he decided he didn't want to go inside.
Sawyer can be difficult to handle when he faces situations like these because his anxieties cause a very physical response, usually in the form of spinning uncontrollably. Suddenly he is unable to listen to instruction, and he certainly can't negotiate reason.
After some time dancing/watching Sawyer spin around in the car park, Lloyd said something that managed to reach him. He offered to take him home and have their own disco.
A few minutes later, Lloyd and Sawyer were dancing in the kitchen with glow-sticks, and it took just 1 song for Sawyer to feel like he had taken part, and that disco day was ready to end.
This is a massive well done to Sawyer of course, but I'm throwing this one to Lloyd. By understanding Sawyer didn't want to go inside the disco he allowed him to make his own choices based on his own feelings.
By dancing with him in the car park he let him know - without saying a word - that his feelings were valid, and understood.
And by offering up a safe space alternative, he empowered Sawyer to walk away feeling excited again, instead of disappointed.
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 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 all 8-year-old boys, 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.
i feel your pain but as someone said i think it does get easier as they get older i have found anyway , the week before he goes back is always a little stressful for us and then going back takes a few months actually , he still isn't settled again yet but at secondary school its all new lessons ,all new rooms ,all new teachers so a really big deal , you do an amazing job as we all do x
Nothing to say to help but I love you ❤️ and sorry we weren’t there to help you this summer x
Nathaniel finds holidays really hard, again the lack of routine. What we found helped was putting in a routine that we knew we could fairly easily maintain. Designated TV, electronic, outside, shopping, meal times. We wrote it down and signposted very regularly. Sometimes it didn't work and then we would have the meltdown. As he gets older we struggle to get him to do anything as his default destress mode is sitting in a room on an electronic device. I feel your pain and the only advice I can give is learn to deal with your anxiety (not as easy as it sounds I know) but it will make a tremendous difference to the way you deal with life and autism. Huge hugs and know that you are doing a tremendous job and that you are enough ❤️
Bless you. It so hard. Through the six weeks especially, you feel limited. Alfie is like Sawyer loves his home and would stay in it forever. We took Alfie places and if there was too many people he would run round panicking. My Alfie will be six in April and I worry how I'm going to handle him as he gets bigger cos he so strong already. You are doing an amazing job with him. Keep your chin up ❤
Sending you love and strength xxx
I can't offer any words od comfort, but I do have a friend who I think can offer you some amazing insight, support and encouragement. Xx
i use to hate the 6 weeks , we now have bad first week then bad last week .. the rest are managable
We've been battling with almost daily meltdowns, anxiety, upset and anger. Sawyer has reacted badly to the change in routine. Piper has been upset at Sawyer's behaviour, and in particular, his indifference toward her. Lloyd and I have felt frustrated and helpless.
Just because you know there is a reason for the meltdowns and behaviour, doesn't make it easier to cope with. (Autism parents, am I right?! 💙 )
I've cried a lot in the past few weeks. And I will tell you all the reasons why soon, I promise. I want to show you the many struggles we face, as well as the good days.
But today WAS a good day. And for now I just want things to be about that. I want to document it here so that I can look back on it tomorrow, and in a few days time when I feel like breaking down all over again.
Fed up of people and their age appropriation rubbish!!! It was years before my son was even interested in anything. He's going to be ten this year and loves the tellytubbies. I will be buying him something Po inspired. 😉😉😉
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.
Hello Number 3, what's your name and where d'you come from?
My name is Nic. I'm a 34 year old mum of two, married to Lloyd.
I've got crazy curly hair, a freshly-pierced nose, shoes with flashing soles, a one-eyed cat, and an incredible ability to make myself sound more interesting on paper than I am in real life... 😉
I am a working mum and spend my entire life running from one place to the next, with a firm motto of 'work hard, play hard'. If I'm not at work, in a school meeting or writing, you will find me in the pub.
Our story with autism began about a year after our eldest was born, when I started to realise that his behaviour was unsual compared to that of his peers. A hefty speech delay cemented my concerns, and after a long and drawn out process he was diagnosed with ASD.
Our youngest (and final) baby is the amazing 5 year old Piper, who is neurotypical. Lloyd and I often wonder how different our journey might have been if she had been born first and Sawyer second. Hindsight is an incredibly useless thing...
So that's my bit over I guess!
How about you? What brings you here?
I'm so glad you came x
. . . .
#autism #autismawareness #asd #sensoryprocessingdisorder #sensory #amwriting #autismspeaks #autismlife #breakthestigma #autismsupport #bodypositive #neurotypical #nhs #mystory #allaboutyou ... See MoreSee Less
Hello my name is Steph. I follow your page because I am your friend and a huge fan of Sawyer. Your blog regularly educates me about Autism and I try to educate my son #autismawareness #breakingthestigma
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.
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.
The local outdoor swimming pool was so warm today that the experience quickly became too much for Sawyer.
After a short while he became frantic, uncontrollable and upset. It is always difficult to know what to do in those situations, especially somewhere like a swimming pool when a meltdown can quickly turn dangerous.
Shout out to the other mums and dads for not being judgemental, staring or whispering (you'd be surprised...).
On the way home, Sawyer soothed himself by reciting Thomas the Tank Engine lines in his head.
What does your autistic child do to self-soothe after a sensory meltdown?
#autism #autismawareness #asd #sensoryprocessingdisorder #sensory #amwriting #autismspeaks #autismlife #breakthestigma #autismsupport #thomasthetankengine #thomasthetrain #swimming #summer #heat #britishsummer ... See MoreSee Less
James my Grandson still love his trains,from Thomas and friends he has developed a passion for visiting the local Station just sitting watching trains come thru .We take him on train journeys he enjoys also he loves the underground ,something we never though the would cope with.
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.
Really hard for N's Dad to talk about anything but he and N appear to have many similar autistic traits. Just means the emotional connections aren't there. Awesome work on getting the words and thoughts out there Lloyd.
....... Part of a beautiful family, big hugs 🤗 xx😘🌸💞
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.
After a lazy morning spent inside on gadgets and laptops, we decided to head out in to the woods, which is a family favourite of ours.
It can be difficult to convince children to step away from the screens and venture outdoors. Especially these days, when most households have multiple gadgets and we as adults don't tend to lead by example...
Sawyer certainly wasn't happy at first. It was humid, the grass was teasing his ankles, and as usual he walked in to stingy nettles within seconds of arriving.
But after a tangy tangerine (sour tastes often help to override Sawyer's other senses), he declared that 'Nature is awesome!'.
A (successful!) walk in the woods with your family really is the best therapy. 💚
#autism #autismawareness #asd #sensoryprocessingdisorder #sensory #amwriting #autismspeaks #autismlife #breakthestigma #autismsupport #mothernature #bearhunt #family ... See MoreSee Less
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, whether their children 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:
Honey, you are doing your best and you are smashing this (whether you think you are or not) and because of that Sawyer is AMAZING. He teaches us all so much about life. He is the most incredible boy I’ve ever met and I’m so proud to be able to love him x
Right on!!! Well stated. Cheers!!!
Don't know how you do it but you always write about what I need. We are on holiday at the moment and due to awol cat the journey did not go to plan. N and his dad came down a day later than planned. As soon as N got here I could see he was struggling and he took himself off to his room. Fuck you autism - I work hard, I train hard, I learn all I can about autism and support my son the best I can. So just this once let us have 5 minutes if a normal family holiday. I know that is not going to happen so I have had a few indulgent tears, will put my big girl pants on and get on it again. Love to you all 💜
i'm with you 100% ,i feel what you feel on a regular basis x
All the admiration and love for you being one of the best humans by showing us all that you're still human. Guilt is a fucker. Love you all xx
I love and don’t love this at the same time, you know what I mean, keep on keeping on love - you’re smashing it the same way we all are - it’s the hardest job in the world being a parent especially when it’s not simple and like you said you have allllllll the other things and people in life to think about - he’s a lucky boy as he has two loving parents and beautiful sister to be around him - 😘😘
My gorgeous boy has almost got his energy back! And I couldn't be more grateful to have my house back to some sort of normality.
Today, Sawyer was complaining that he was hungry, but simultaneously refused to eat. It struck me as odd, because from what I could work out he didn't have a tummy ache, and usually after a bug comes the urge to eat an entire WORLD of food.
After hearing his tummy rumble from across the room, I suggested he try a little nibble of something just to see how it felt. He agreed, and when I asked him what he would like to try, his nervous reply was 'something healthy'.
Sawyer is such a cheerful and generally agreeable boy that it is easy to forget the complex anxieties that bubble just beneath the surface. He often, silently, takes things literally and stores them away in his brain as truths.
Sawyer blamed himself for being unwell, and I had no idea. He knows that healthy eating and exercise promote general wellbeing, and had assumed that he was therefore an unhealthy child because he had been so unwell.
We have now spoken about it, corrected his thought process, drawn pictures, laughed, and he has eaten dinner early because he was so hungry.
Sometimes Sawyer's sensory issues make complete sense to me, and other times I just don’t understand at all.
Minutes after I hit publish on my last post, suddenly and without warning, Sawyer started to throw up. Sensory Processing Disorder means that he often doesn’t display the same warning signs that other children do when they are starting to feel poorly. Sawyer finds it very difficult to distinguish the sensation of discomfort/pain/nausea among the blur of other senses he battles with every day.
This particular part of Sawyer’s sensory issues I can understand and make sense of. And sometimes - I can help. If I see that he looks uncomfortable I can ask him closed questions to try and pinpoint exactly what might be changing his behaviour and making him seem prickly, upset, angry or confused.
Sawyer has been poorly with this nasty bug since Sunday evening, and as you can imagine, severe sensory processing issues + throwing up, does not = happy and plain sailing. Again, I understand – no-one likes to be sick. And I can help. I can reassure, I can explain and I can comfort.
Today, thankfully, he is feeling a lot better. He woke up with colour in his cheeks and he asked for a drink of water. He nibbled some toast and he asked for ice-cream. All the typical actions you’d expect of a child recovering from a stomach bug.
Except he has also been asking to suck on a lemon since 9.30am. Repeatedly. Anxiously. Desperately. As if it were the only thing he could possibly think of that would fix the way he was feeling, even though he couldn’t explain what that feeling was – or how the lemon would help.
Finally, reluctantly, I cut open a lemon and handed it to him. He retreated to the stairs and sucked on his lemon – face wincing and contorting as the sour taste filled his mouth.
And when all the juice was gone, he handed it back to me with a massive sigh of relief.
"That’s much better now”, he said.
And I don’t think either of us know why.
#autism #asd #autismawareness #autismawarenessweek #sensory #sensoryprocessingdisorder ... See MoreSee Less
Poor Sawyer. 🙁
Jessie seeks strong flavours, apparently it's one of the quickest ways to get such a strong, calming sensory input.
Amie, this lady’s page may be of some help for you and Dan. Xx
Although I am not happy Sawyer has been poorly I am happy that you have shared this. Nathaniel is the same - no warning of when he feels ill to the point of him throwing up all over his Sunday dinner; no warning what so ever. It is comforting to know that others have the same reactions.
Glad he is on the mend x
My face winced too just the thought of sucking lemons. Glad he’s feeling better!
Family meal, probably being judged by those around us for allowing our children to have gadgets at the dinner table (can you relate?).
Once I would have felt like a failure. But these days I'm relaxed and happy. Both of our children are sitting at the same table, and these smiles prove we must be doing something right 💙💙 ... See MoreSee Less
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.
Never thought there would be a day that Sawyer would eat Maccy Ds!
Heart breaking when they want to be on their own, even though you know the reasons. N went round a friends after school today; 1 to 1 socialising and new food. He coped well but has spent the last hour on his own desensitising and does not want to interact with us. BUT he did something outside of his comfort zone, he coped and he had a good time = result ❤️
3rd in the new series on the Art of Autism titled ‘Happy Sawyer’ By Nikki Mann It’s like this: The build up to diagnosis feels a bit like climbing a really steep hill, without knowing what you will find at the top. The whole way up, you know which direction you’re aiming for, but you have no idea what is waiting for you, or how you’ll feel when you finally reach the top. [ 1,387 more word ]
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.