Distraction of Adventure #1

Sawyer’s EHCP planning meeting will take place in early September, and the anticipation is difficult to stomach. Despite our positive meeting with the Educational Psychologist, I find myself poised and ready for action, my armour still very much in place. I feel I am staring at the No Man’s Land of autism – desperately hoping to see poppies.

There are many downsides to this funding process landing smack bang in the middle of the summer holidays, not least of which is the school being closed. But as with most downsides, if you look hard enough then you can generally find the upside hiding obscurely somewhere in the hedgerow. And I found it. In our case the upside to this long summer break, has been the distraction of adventure.

A few weeks ago we set off on our Spanish getaway. Any change of routine is difficult for Sawyer, and so a lot of forethought and preparation had gone in to the planning of this trip. I booked Meet & Greet parking at the airport so that there would be no waiting around, no shuttle buses to catch and no extra time added to our journey. Happily, it worked a treat! We pulled up in the car park, drove to our bay, dropped the car key off at reception, and that was the end of that. Before we knew it we were inside the terminal and ready for the real fun to begin! Busy spaces like airports can be a sensory nightmare for Sawyer, and so his ear defenders were a saviour as we made our way through check-in and over to security. With Sawyer stood behind me, instructed to wait for my call, I walked through the metal detector without issue, and was ushered over to the left hand side to collect my belongings. I turned with a huge smile to Sawyer, and nodded at him to follow me through the detector. We had been very cautious to ensure he had no metal on him at that point, but what we hadn’t realised was that random spot-checks were a thing – and unfortunately for us, Sawyer had been ‘spotted’.

The Robot Security Man ushered Sawyer over to the right hand side to stand in a queue of people he did not know. I immediately approached and asked if I could stand with him, to which I was plainly informed it was not permitted. Now, is it me, or should ANY 6-year-old be accompanied by an adult through a process like that? Let alone one who has autism. I calmly explained the situation and, irritated, Robot Man told me I could stand with my son but that I would have to go through the security check. Swiftly, I hid my explosives in my boots and hoped for the best.

Who remembers the days when being flagged at airport security meant a quick pat down on the way through? My Dad has Type 1 Diabetes and I swear even with a bag full of needles and drugs he was generally waved through without issue. These days there’s a Tardis. A bloody Tardis, I kid you not. But luckily Dr Who seemed incredibly sweet, and when I approached him to explain our situation he crouched down and softly, calmly explained to Sawyer that the Tardis was in fact just a photo booth, and that he only needed one quick picture. I wish I’d taken Dr. Who’s real name so that I could thank him properly. Let’s just hope one day, somehow, he reads this.

Finally, we were through security. Hot and bothered, but just as excited, we made our way along the corridor. I had called my sister (who was already through on the sensible side) and asked her to grab the children drinks so that they could refresh once we found them. Everything was suddenly back on course.

And then the fire alarm went off.

 

 

 

Lifeline

I hadn’t realised how draining the EHCP process had been until we saw the Educational Psychologist a few weeks after the application was approved at panel. Although compiling and writing out evidence had been time consuming, I was so determined to get the points down clearly and thoroughly on paper that surprisingly, I didn’t find myself emotionally tied to the pages.

The initial application for assessment was 16 pages long, not counting the substantial professional reports, assessments, school documentation, photographs and so on. The school SENCO and I worked hard for several weeks to make sure the application was thorough, well put together, and easy to read. So I was surprised when, a week after the application was deemed successful at panel, I received a request for further evidence. What more could I possibly say that hadn’t already been said somewhere in those 16 pages? What more did they want from me – actual blood? Then for fuck sake just take some already! We arrived back from our family holiday at the end of July, and the request was sat on my kitchen table when I arrived home. The following day, surrounded by half-unpacked suitcases, I sat and wrote (by hand, because apparently the START team like to waste a) paper, and b) my time) out the evidence all over again. Only this time I put clear bullet points, hoping that this method would mean that someone on the receiving end would actually stop to read them. I sealed the envelope, and off it went. Yet another package full of facts about my son and his additional needs. And then I had dinner.

10 days later, the Educational Psychologist (EP) came to our home to collect the evidence he needed to write his report. He arrived exactly on time, and warmed to Sawyer incredibly quickly (which is easy – cuz Sawyer’s awesome). To my surprise he spent the first hour just chatting to me, asking questions and getting an idea of what sort of child Sawyer is, and what his issues have been. He made notes throughout the conversation, really listened to what I had to say, and made some sensible suggestions for things we could try that may help Sawyer’s needs at home.

During that conversation I reiterated many of the issues that had already been written down over the first two reports. They were same words that I myself had formulated in the first place, yet somehow now they seemed different. I let the words enter my brain via my ears for the first time. Suddenly the facts were Sawyer’s struggles. The evidence became his discomfort. And the proof became his pain. Suddenly, in a moment that I can no longer pinpoint, I felt exhausted. The gravity of what I had been repeating for so many weeks, months, YEARS suddenly fell down hard on my shoulders and for a moment I forgot what the goal was. I wanted only two things then: to cry, and to sleep.

The EP went on to play some games with Sawyer, and had him take part in some tasks so that he could get a feel for his abilities. He spent hours in the house with us, and it became clear to me why the local councils keep these teams of professionals so tightly guarded. They are experts, and as such their time is expensive, and the reports they compile take time. The rest of the meeting went by in a blur, and I felt neither confident nor unconfident as he stood to gather his things.  But then he said something to me that will stay with me forever. He told me that he thought my knowledge and understanding of Sawyer’s needs, and of how autism affects him, was impressive.

Impressive.

It isn’t a word that I’ve ever really thought could be applied to me, since I’m fairly average at almost everything. Yet there I was, stood in front of a specialist, being told that my knowledge and understanding was just that. And on a subject that I care more about than any other – my child.

I had been so worried in the days that lead up to his visit. Worried that he wouldn’t be able to see Sawyer’s needs the way that I can, and worried that I had made a mistake by convincing him to visit Sawyer at home rather than delay until September so that he could be assessed in school. All of those issues swelled in brain as I showed him to the door. The last thing I heard him say was that he would report that Sawyer needs 1:1 support in school, and that he would advise that an EHC Plan should go ahead. My ears were ringing and my hands shaking as I smiled and closed the door behind him.

Did he just say that he agreed with me?

The Day Autism Kicked My Arse

On Monday 3rd July we woke up and got ready for school in the same way we do every day. We cuddled in bed, we got dressed, we ate breakfast, we put the bags in the car, we cleaned our teeth, and we left the house. Neither of the children mentioned the fact that it was their Dad’s birthday – because they had not been told. As far as they were concerned, his birthday had been at the weekend – on a lazy Sunday, when there was no school run to battle and no fixed schedule to keep to.

With all the stress I had been under gathering evidence to add to the application for Sawyer’s additional support funding (EHCP), I was trying hard to find ways to avoid any unnecessary upset. Even if it meant moving my own husband’s birthday.

I thought it was ingenious.

Until it wasn’t.

 

Monday 3rd July, 10:12
To: Statutory Assessment and Resources Team (EHCP)
From: Sawyer’s Mummy

Dear Statutory Assessment and Resources Team,

I am writing to tell you of an incident with Sawyer this morning that I think demonstrates the extra resources he requires at school on a regular basis. I would appreciate if you could add this to Sawyer’s EHCP application file.

This morning Sawyer suffered sensory meltdown. As is often the case, it was difficult to determine the exact cause of the issues, but we of course started to put things in to place that would help him, such as his ear defenders and helping him to remove his jumper (Sawyer’s sensory issues mean that he is often unable to determine that he is too hot). Sawyer’s father was supposed to take him to school this morning but because Sawyer was emotionally strung I decided to take him as this is the normal routine and I did not want to do anything that would disrupt him further.

Despite these extra steps to stave off complete meltdown, by the time we got to the school door Sawyer was very distressed and did not want me to leave. I gave him some extra time to calm down but eventually I had to leave and it took the school head teacher, his class teacher and the class teaching assistant to stop him from running out of school, to lock the door and calm him down, etc.

I called the school an hour later and he had only just returned to class after being too highly strung to be allowed in to the classroom until then.

I would appreciate if you could acknowledge receipt of this email.

Best wishes,

Sawyer’s Mummy

 

Monday 3rd July, 16:43
To: Statutory Assessment and Resources Team (EHCP)
From: Sawyer’s Mummy

Dear Statutory Assessment and Resources Team,

I am writing to follow-up my email sent this morning containing information on an issue Sawyer faced at school this morning.

I received a phone call this afternoon from the Head of School. She had been one on one with Sawyer for well over an hour because he had gone in to complete sensory meltdown and was a danger to himself and others. Sawyer was running to and from one end of the school as an ‘escape’, with members of staff having to leave their tasks to ensure he did not become lost somewhere within the school.

Sawyer was unable to return to class and and I had to collect him early from school. It took me and the head teacher 20 minutes to coax him out from under the table in her office and move him the 20 feet distance from school to my car.

Sawyer being removed from class (even school) is now happening on a regular basis, as detailed in his application. I am writing this today to show a classic example of the issues the school faces, and continues to face, each day with Sawyer.

There simply are not the resources available in the school to give him access to the curriculum – and most importantly – to ensure his safety.

I would appreciate if you could acknowledge receipt of this email, and add the details to Sawyer’s file.

Best wishes,

Sawyer’s Mummy

 

After 20 minutes trying to convince Sawyer that he was safe and that he could come home with me, it became clear that I was going to have to remove him by force. With my 4-year-old daughter trailing dumbstruck behind, I scooped Sawyer up in my arms and carried him kicking and screaming to the car. The head teacher followed dutifully, carrying school bags, lunch boxes and my own handbag. When we got to the car I sat him in his seat and somehow managed to close the door (thank you, child locks). The head teacher and I exchanged sympathetic looks, and I’m pretty sure it wasn’t just me who was trying hard not to burst in to tears. I opened my car door and slumped down in my seat, the sound of hysteria still filling every inch of our world. Half a second later I turned around to see the rear passenger window open, and Sawyer half escaped, clawing his way out of the car screaming something about needing to get back to maths. At that moment his sister burst out in loud and uncomfortable tears, another jab at my heart, reminding me that Sawyer is not the only one who suffer from his autism.  A further 15 minutes later and he was calm enough to drive the 5 minutes home, where I then spent a further 20 minutes trying to convince him to get out of the car.

In the evening that followed I sat and thought about the application for EHCP (additional support funding) we had submitted two weeks before. Would it be enough? What if they didn’t accept? Would this torment continue forever? Is he even safe in school? To reinforce that last point – when my phone rings and reads SCHOOL on the handset, my blood runs cold. I anticipate a call to say he’s escaped and they don’t know where he is. Or that he’s stepped backwards off the playscape and is being transported to hospital. Or worse. For me, Sawyer’s meltdowns do not end when the meltdown ends. And they never will.

8 days after autism kicked my arse, I received a phone call from the START team to say that Sawyer’s application had been approved at panel. They would be undertaking a full assessment of his needs, with a view to putting an Education, Health and Care Plan in place for him. I was elated, exhausted, upset and excited. Finally, some good news.

But once again,  the battle was just beginning.

 

Seven

Another year

Another win

Thomas is out

But Mario’s in

 

I look at your face

As you smile in delight

I will never get tired

Of that wonderful sight

 

To think that once I did not know

If birthdays would ever make you glow

If you would ever understand

Or if you’d come out of Thomas Land

 

Yet here we are at seven years old

You’re funny and smart, happy and bold

You surprise me daily, you open my eyes

You show me the world needs more than one size

 

With love in my heart I will hold you near

On every birthday, every year

My gorgeous son, let me wish you with joy

A very happy birthday, to the world’s bestest boy.

 

 

 

Small Mercies

Today Autism kicked my arse. Exhaustion has set in and I can’t formulate the words I need to properly explain how testing it has been. I will soon – I promise – but for now, let me rewind and take you back to yesterday so that I can express feelings of love and not hate. Happy instead of sad. Excitement instead of fear.

Yesterday I took Sawyer to the disco birthday party of one of his school friends. Not having formed strong bonds with any children in his class, birthday party invitations this year have sadly been few and far between. This isn’t anyone’s fault and it isn’t something Sawyer notices or worries about yet, but it is a big fat elephant in the room, and one that I’d like to expose for transparency. Birthday parties are often difficult for me Sawyer. Excited children quite rightly bounce around like pinballs, making the room hot and the noise-level high. With this particular party being a disco, we went well prepared with ear defenders, a drink, and lots of forewarning of how the party was likely to be.

Sawyer and I strolled in the sunshine to the party, whilst he talked incessantly about Mario and Luigi. As we approached the hall, he could hear the music and asked me if he could wear his ear-defenders, which I helped him to put on. At first he was afraid to enter the main room, which was dark with lights flashing and rotating as you would expect from any good disco. Sawyer followed me in to the room and quickly requested that we sit in the corner for a while and ‘chair dance’. I perfected the Bum-On-Chair-Tango and was half way through the Bummambo when he looked up at me and said “Mummy, I don’t like the noise and I’d really like to go home”. I don’t think I’ve ever been more proud of a human being than in that moment. He tried. He tried, he acknowledged, and he managed to calmly instruct me that he would like to leave a situation that he was finding uncomfortable.

As we stood to leave, I explained to the Mum of the party (Party Mum, if you will) and she was incredibly understanding of our situation. With a genuine look of concern on her face, she said something that, although seems simple, very few people think to say. She simply asked me if there was anything she could do to help. That’s it. Just one simple line that to me, meant everything. One simple line that made my weekend better. One simple line that made me realise that Sawyer will be just fine, because although he faces many obstacles, there will always be people who want to help.

This post is dedicated not only to Party Mum, but also to everyone in our lives who shows kindness and understanding toward Sawyer and our situation. Your support makes days like today easier to cope with, and it gives me hope for the future.

20 minutes after arriving at the party, Sawyer and I strolled back home. And as he rifled through his party bag with a big grin on his face he broke my heart for the millionth time.

“That was the best party ever”, he said.

 

WhatsApp Image 2017-07-02 at 13.01.28

Money Talks

I live in an incredibly wealthy city. A city that is full to the brim of academics, doctors, and entrepreneurs. House prices here are only for the rich, and expensive private schools decorate the city centre like gold leaf. Last week I went to St. John’s College May Ball, where the smell of money drifted through every archway and over every bridge, eventually exploding in to the sky in the most incredible firework display I have ever had the pleasure to witness. They say that money talks, but in Cambridge it doesn’t talk at all – it shouts. And I’ll admit that over the past 15 years I have become decidedly attached to its lavish charms. I am lucky. I go to balls. I climb atop King’s College Chapel roof, and dine with the Fellows in college halls. I know amazing people who invite me to amazing parties. I love Cambridge. I am Cambridge.

For the past few weeks I have been working with Sawyer’s school to apply for what is known as an EHCP. Education Health and Care Plans are designed for children and young people aged up to 25 who need more support than is available through special educational needs support (which, by the way, is almost nothing). The plans supposedly identify educational, health and social needs and set out the additional support to meet those needs. Sawyer cannot access the curriculum in the same way his peers can, and I have doubts as to whether his school have the resources available to even ensure his safety each day. It isn’t their fault – they are overstretched already. They simply have no money.

At the end of May we sent off for Sawyer’s EHCP. The application was vast and thorough, and took several weeks to compile. Broken in to sections, the application asks for intricate details, extensive reports, consistently documented evidence, and more. We went through the form and ticked as many boxes as possible, thinking of examples that would properly evidence whatever it was that they seemed to be looking for. The most saddening, heart-breaking part of the entire process wasn’t reading about the fact that Sawyer doesn’t form close friendships, that he distances himself from other children, or that he isn’t reaching the targets expected of his year group (or the one below that). The heart-breaking part was realising that in order to get help, Sawyer first needs to fail. Brenda from Early Support told me plainly years ago that Sawyer had ‘too many positives’ to get a diagnosis, and sadly his educational life so far has followed that same pattern. Sawyer isn’t violent, he isn’t rude and he certainly isn’t beyond help. And therein lies the irony. He isn’t beyond help, and thus he is beyond help.

After two-and-half weeks the local authority sent me further forms to fill in with evidence of Sawyer’s issues and what my beliefs are surrounding his educational needs. I sent the forms off yesterday and they will have received it all today. They now have four weeks left to decide if they will even agree to assess his additional needs. Currently on their desk is 4 years worth of evidence, and the agreement from every health and education professional who has ever come in to contact with him. It is currently all lying on a desk somewhere, waiting for someone to decide if they will even bother to assess him.

In Cambridge, money shouts. Yet for Sawyer, money here is painfully mute.

Still Too Many Positives

So much has happened for our family over the last 4 or 5 years. Our children have grown older, school years have passed in the blink of an eye, preschool changes have taken place and most importantly: happy memories have been made. Sawyer is growing in to an amazing little boy, with unusually displayed yet prominent signs of empathy, emotion and happiness. Despite the demons he battles daily, Sawyer is polite, endearing and loveable. Many of the traits I feared he might never develop have – with help – started to appear, and many of the aspects of autism I feared seem to have been kept at bay. The struggle of autism and sensory meltdown continues daily, but if I’d been able to see ahead to 6-year-old Sawyer when he was diagnosed back in 2014, I would have been a happy woman. Neither Sawyer nor his autism has ever been the problem in our lives – we’re committed to helping him succeed. The problem is the system that professes to do the same.

In early 2014 my relationship with the Early Support system reached its untimely demise when Brenda told me that in her professional opinion Sawyer had ‘too many positives’ to get a diagnosis of anything. I’ll remember those words until the day I die because it occurred to me then how lucky I was to have other people around me who saw would I could see, and believed what I believed. Of course parents want to be told that there is ‘nothing wrong’ with their child – and if the excruciating waiting list wasn’t enough of a reason to give up hope, then a comment like that would sure as hell shove the nail right in to the coffin. Brenda must have sensed my disbelief at her comment because she quickly clarified that what she had meant was that the support Sawyer was being offered would be the same whether he got a diagnosis or not. It has taken me around 3 years to realise that actually, she was right.

Sawyer is now in Year 2 at school, and simply cannot access the curriculum in the same way his peers can. Although he has reading age of 11, he is considered to be behind with reading because he is unable to discuss the book appropriately with his group once he has finished. I’m reminded as I type that Sawyer learned to read in a way that the school systems fail to cater for. Instead of learning phonics and how to blend words, Sawyer simply remembered the words he had read. He stored all the words up in his brain and he taught himself to read through memory. Thank you autism. And thank you to school of course, because once he had mastered many words, he was then able to access the rules of phonics. My 6-year-old autistic son can read with more passion and excitement than most adults I’ve known in my life. Yet the curriculum doesn’t recognise those positives and his school report still came home stating an underachievement. It isn’t the fault of the teachers who are working so hard to help him – they are already exhausting their resources – it is the fault of the people at the top. The people with the money. They are the ones who refuse to help my son. They are the ones who make the decision that children should be expected to fail before they are entitled to any help. And even when they’re failing, the help may never come.

It took 2 years of preschool, a diagnosis of ASD, and 3 years of school before we had gathered enough evidence to send off for an Educational Health and Care Plan (EHCP). Along with the head of school, his teachers and the SENCO, we put together an application that shows explicitly how much Sawyer needs additional support in school. Case-studies; details of the many strategies that are in place; medical reports; psychologist reports; pictures; photographs; examples of his work – all in there. 5 years – almost the whole of my son’s life – written down, carefully adapted, and printed off in to a neatly labelled folder. Two weeks ago that folder was sent it off to the Powers That Be. Panel took place on the 1st June but it could take weeks to hear back about the decision. If we are successful in his application then Sawyer will be entitled to a sum of money that will allow his school to give him the constant and specific support he so badly needs. But pickings are slim, and I have no faith left in the system. Even if he is awarded what he deserves it could take another 10 months (at least) from now for the school to receive the money they so desperately need.

And so it saddens be to admit that Brenda was right after all. I realise now that autism was never against us, and nor were sensory issues. The school wasn’t against us and neither were his teachers. The issue that has been standing in our way for all this time is the fact that my son is absolutely and completely amazing, without question.

He simply has too many positives.

 

 

 

Click here to read Part I – Too Many Positives

 

Sense and Sensory Ability

It is 7pm on bank holiday Sunday and I write this post from the comfort of my living room. The doors and windows are open, and I can see the sun starting to hide itself behind the foliage at the end of my garden. Days like these in the UK are few and far between, and a sunny bank holiday – even in late May – is an anomaly. So here I am sat in shorts and t-shirt, with a welcome evening breeze sliding through my home, bringing with it the scent of a dozen local barbecues, and the sound of happy, relaxed, satisfied laughter.

Sawyer had a hard week at school. It was the last week of half term and historically he starts to collapse emotionally during the final week. I suppose it could be down to any number of reasons but most likely it’s a mix of them all. The last week of a half term is often arranged slightly differently than standard weeks, and I think he struggles to accept the disruption. Don’t get me wrong, these changes are handled incredibly well by his school and he is given a lot of notice and preparation. Nevertheless it seems to affect his sense of security, and more often than not it results in daily meltdowns. On top of this, like most children (and teachers – am I right?!) Sawyer gets tired as half term approaches. And when Sawyer is tired, all of his other senses seem to be thrown completely off course, and the meltdowns become all the more prominent. And Sawyer is tired most of the time. Because Sawyer cannot get to sleep.

It is now almost 9pm and only two short paragraphs have managed to escape my fingertips. Sawyer is currently howling in his top bunk, and his sister wails out of frustration from the bunk below. They are hot and bothered. Five minutes ago Piper called down to ask for Sawyer’s ear-defenders, which for a few moments I thought was an incredibly perceptive observation to make about her older brother and his sensory issues. However I think I jumped the gun slightly, since her motive was not entirely selfless – she simply wanted to wear them to block him out. Perhaps I should order an extra 3 pairs. We have tried everything to help Sawyer drift off to sleep at a reasonable hour. From light displays to music, to white noise, weighted blankets, lava lamps, and beyond. His brain simply will not switch off. The worst part about his inability to drift off to sleep even when he is supremely tired is that on school days, of course he needs to be awake by a certain hour. We become trapped in a catch-two situation that I haven’t yet found a way to out-manoeuvre. He stays awake late because he cannot wind down, and then he is tightly strung the next day because he is so tired.

This weekend we had planned to take the children to the seaside. We can reach our favourite beach in less than 2 hours, and with the weather so uncharacteristically pleasant, we thought it would be a treat for the entire family. Unfortunately Sawyer has found it so difficult to cope with ordinary situations this week that on the day, the thought of taking him to a packed seaside town filled me with dread, and we eventually decided to give it a miss. I spend my life trying not to avoid situations because of Sawyer’s autism and associated sensory issues. I fight a battle with myself almost daily, trying to decide if I’m being overprotective, lazy, emotional or naïve. This weekend I decided to admit defeat and we settled for a walk by the river instead. I’ll be honest and admit that I sulked for a fair amount of the afternoon, mourning the loss of my fish and chip lunch. But I had an epiphany as we stood smiling and waving at the people sailing by: Manchester lost children this week, and mine are both here by my side. Autism might be inconvenient, but I don’t know what I would do without it.

Sometimes I forget the extent of Sawyer’s sensory issues. I forget that simple things we all take for granted can make him feel scared and confused, or sad. This week has been hotter than any of us are used to, and where most of us sit back and revel in the warmth, for Sawyer it is just another sensation that he needs to battle. Sawyer cannot easily pinpoint his discomforts; rather they blend in to one. He cannot easily differentiate between tired and hungry, and hot and cold. I suppose it must feel a bit like when you’ve got an itch somewhere but you can’t work out where it is. It drives you crazy and it consumes everything until it is rectified.

This weekend Sawyer has worn his ear defenders more than he ever has before. When I bought them for him a few months ago I was adamant that I only wanted to use them if absolutely necessary, because I of course want to avoid anything that puts yet another barrier between my son and the rest of the world. But interestingly, what I have learned this week is that those ear defenders don’t just help when a situation is too noisy, they help when another sense is taking over and he doesn’t realise it. Today he was getting too hot and uncomfortable as we walked along the river, and the ear defenders helped. It seems that sometimes if we can reduce one of his senses, the others don’t appear quite so overwhelming to him. If we manage to catch the subtle early signs that he is feeling overwhelmed, perhaps this will be our way to further reduce the meltdowns he endures.

As I sit here enjoying my wide open windows and summery breeze, I remind myself that to Sawyer, the windows being open is just a way of allowing extra sounds to invade the place he feels most safe. The smell of coal on a barbecue is appealing to almost everybody, yet it is unfamiliar and disruptive to him. I can hear the neighbours chatting and laughing in their gardens, and their contentedness is so infectious to me. But to my 6-year-old son, the very same sound is repugnant and unnecessary. It simply has no place.

Autism keeps me on my toes and forces me to constantly learn and adapt. Basic tools are readily available for parents of autistic children, but the truth is that you have to just do the best you can do with what you’re dealt with at the time. There are no quick fixes and obvious answers. You know what? Sometimes even when there are good suggestions, you just aren’t willing to hear them because you’ve spent the entire day (week, month…) just doing your best. It genuinely is an exhausting and relentless education. Last year I realised that sometimes Sawyer’s biggest meltdowns stem from something as simple as hunger, because in unusual circumstances he cannot differentiate one unpleasant sensation from another. A couple of months ago I realised that holding Sawyer in a firm embrace for a while can eventually calm him down. And this week I have realised that dampening-out one of Sawyer’s senses helps him to better manage the others. It is an exhausting journey, but there is no alternative when you are determined to guide your son toward living as happy a life as possible. Sawyer’s autism isn’t going anywhere, after all.

And lucky for Sawyer, neither am I.

 

The Parent Trap

Marriage is a funny concept when you stop to think about it. Strip away the legalities and the love, and you’re basically left with an agreement to spend the rest of your life desperately trying not to kill another human being. Perhaps that is why, traditionally, people get married before they have children. Perhaps it isn’t so much about religion and chastity, as about the chance to practise being legally bound to somebody that you genuinely might accidentally kill.

A day or two after Sawyer was born, a stark realisation washed over me: that what we had done could not be undone. Staring at his little face in the middle of the night, milk leaking from each of my nipples and deep grey puddles beneath each eye, I realised that Lloyd and I now had this inexplicable responsibility for the rest of our lives. And although that prospect terrified me to the core, I do also remember feeling a connection with Lloyd that was unlike any other I’d known. We were bound, truly, forever. Not by a verbal, or even written contract, but by shared love and protection of another human being. We were no longer her and him. We were Mum and Dad.

The early Sawyer days were both exhausting and exhilarating. We would go on long family walks pushing him in his pram, sit in pub gardens enjoying the sunshine, and have friends and family over to snuggle with him whilst we made dinner. He wasn’t a velcro-baby like his sister turned out to be 2 years later – he would happily kick about on his play mat for hours, giggling and cooing like a cartoon. Looking back, Lloyd and I were smug. Having our first baby had not put the immense strain on our relationship that you hear about so frequently before you have children – in fact the opposite had happened. We were stronger. Happier. Sawyer and I were lucky enough to spend a summer and a winter together before I went back to work in early 2011. As many of you will know from my earlier blogs, it was around that time that I started to notice some subtle differences in Sawyer’s behaviour, and it is at that point in our history that an invisible yet poignant line has been drawn. First there was a life before Autism, and then there was life after.

I don’t think the full pressure of parenthood really hit us until our daughter was born in December 2012. Sawyer was two and a half and the process of potty training had begun. Meanwhile, my beautiful newborn daughter would not sleep unless she was on my chest, and her greatest hobby throughout the day was screaming for her Mummy. She would not take a dummy, nor a bottle, and she would not go in to a pram. On top of those usual parenting issues, Sawyer, as we know, was incredibly hard work by that point. Suddenly and without warning, the relationship that Lloyd and I had been strengthening was put under intense strain as we muddled through in the dark, sleep deprived and stressed.

  1. Take one painfully tired female with leaking nipples and a sore vagina.
  2. Add one sleep-deprived male.
  3. Confine them to a bedroom for a few hours during the night
  4. Stir in one grizzling, moaning, sniffling, stirring, crying, coughing, screeching baby
  5. For maximum effect, serve alongside a hyperactive, autistic toddler.

I can’t speak for Lloyd, but it certainly took me a good few months to stop wanting to rip his face off when he swanned cycled off to work at 8.30 each morning.

I suppose all parents go through the rollercoaster of emotions that comes with the changing dynamics of a growing family. I certainly don’t wish to downplay anyone else’s parenting experiences (unless you’re going to tell me you found it easy, in which case you’re simply not welcome here). But I will admit that the added stress of knowing something wasn’t ‘normal’ about Sawyer, and the constant underlying burden of needing to find out what, was something I hadn’t been prepared for. I’m not sure anyone could be. That said, there are many issues that parents face that we have been lucky enough to avoid. I never had postnatal depression, for example. I didn’t have any major complications during their births. Lloyd, despite his insistence on BREATHING at 3am each morning, was, and still is, a very good and hands-on dad. There are couples, and single parents (shout out to you), who go through far more traumatic experiences than we did, and I will always be glad that the affliction Sawyer was dealt with is autism and not something more sinister. My son will be fine, and others are sadly not so lucky. What parenting an autistic child has taught me is that we parents could all stand to be a little kinder to each other,  since nobody truly knows what is going on behind closed doors. Do I have a hard time of being a mother of autism? Yes I do. But would it be fair to assume I’m having a harder time that any other parent? Would it fuck.

Our children have now grown that little bit older, and the tensions in mine and Lloyd’s relationship have lessened considerably. Eventually Piper learned to sleep, which gave us back those crucial few hours rest each night, and although we will never have that same respite from autism, we have learned to fit it in to our daily lives, and in to our marriage. It would be a lie to say that Sawyer’s additional needs haven’t been a source of conflict in our relationship, and an even bigger lie to say they never will be again – but like all parents, we make the best decisions we can at the time and we hope that we’re making the right ones. Nothing will test a relationship like having children, and for us autism is just part of that. As well as being married to each other, we are married to autism.

And some things will just never change.

 

Sometimes

 

On a school day, Mummy or Daddy (or sometimes Piper) wakes me up and tells me it is time for school. I don’t like being woken up. I’m always very tired in the mornings, and Mummy says it’s because I stay up reading so late. I am supposed to read for half an hour and then go to sleep, but when I close my book I can still see the characters chasing around in the dark. Sometimes characters from lots of different books come out at once, and that is SO funny! Piper never wakes up when I laugh at the moving pictures, because we have shared a room since she was a baby and Mummy says she likes to know I’m there. Sometimes Mummy and Daddy come up to bed and I am still awake. They say that all my friends are asleep already and that if I go to sleep I can meet them in my dreams. Sometimes I do meet them in my dreams! But usually I see characters from my book and we play all night long, so when it’s time to wake up I’m exhausted from playing in my dreams all night.

Sometimes Piper is too noisy in the morning before I’ve woken up properly, and that makes me really cross. Sometimes when people are too noisy I can’t concentrate on anything else and all the colours go dark and gloomy. On days that Piper has been too noisy then usually my school uniform isn’t comfortable, and time moves too quickly. Sometimes Piper is quiet but Mummy asks me do to something in the wrong order, and before I’m ready. Then my uniform isn’t comfortable again, and sometimes it makes my breakfast not taste good. Before we go to school, I like to have lots of notice so Mummy gives me updates every 5 minutes so that I know how long I have left until we leave for school. Sometimes Daddy takes me to school instead of Mummy, but they always tell me the night before or first thing in the morning, because otherwise I don’t feel in control and that makes my uniform feel uncomfortable again.

Sometimes I take a packed lunch to school and some days I have hot lunch. Sloppy foods can feel funny in my mouth and make me sick, so Mummy and Daddy look at the menu and decide if I should have hot lunch or not. The school hall can be difficult for me even on days that I have a packed lunch. The noise can make me feel very anxious and if it gets very bad, my body doesn’t know how to react. Sometimes things get very loud and hot, and my uniform is very uncomfortable then I start to spin around and run and I can’t concentrate or hear specific voices anymore. Often people try to come close to me to make sure I can see and hear them, but it only makes my uniform feel more uncomfortable. Sometimes even my skin is uncomfortable. My teachers give me my ear defenders to wear in the hall, and sometimes that helps me cope with the noise.

After lunch, I don’t always like to sit with my friends in the classroom. There are so many children and it’s difficult to focus on my work. I prefer small groups, and often I prefer to work completely by myself. Some children are very kind to me but some are too noisy and rough, and I find that very difficult to cope with. I am a very polite boy but sometimes I am rude without meaning to be, because I say whatever is in my mind. Once, I ran across the playground so fast that I bumped in to another child and she fell over. I didn’t realise it was my fault so I shouted “WATCH WHERE YOU ARE GOING!” and Mummy had to wait until I had calmed down to explain to me why I was a bit wrong. Sometimes Mummy thinks the things I do are funny, and that makes me smile. My teacher and my teaching assistant are very kind to me too. They understand that sometimes I get very cross but they know me very well now and they know that I am a very happy and sweet boy who sometimes gets overwhelmed and can’t listen anymore. People who understand me make my life much happier. Mummy and my teachers work very hard together to make sure everybody understands me. My teachers help me to learn, even when I do it a little bit slower than some of my friends. Mummy says it’s important to try hard at school but that it’s also important to learn when I need a break. She says that learning is important, but that being happy is even more important.

When Mummy picks me up from school, I am always very happy to see her. Sometimes I have my coat fastened with my hood up, even when the weather is sunny because I am scared to leave it behind. This can make me feel overwhelmed so Mummy takes the coat off and holds it for me so I don’t get too hot. Mummy usually picks me up in the car because she drives straight from work, but sometimes she walks instead I get really confused and tell her that my legs are too tired to walk home! I love getting home. It is my favourite place to be and I would like to stay there every day if I could, even at weekends! Home is very safe and doesn’t confuse me very much. I get straight home from school and go on the iPad to play Thomas the Tank Engine Roblox. Thomas is my favourite, although I really like Spongebob too! My teachers draw Thomas and Spongebob during my free time at school. I’m allowed to play the iPad until dinner time and then I have to come to the table and concentrate on my dinner. I used to be very sensitive to dinner times but now I find it easier because the rules are very clear. I don’t have to eat all of my dinner but I do have to try it, and there is always something on my plate that I definitely like, so if I don’t like the rest then I still have something nice and safe to eat.

After dinner I like to play with my trains in my bedroom. I like to play with my sister too, but mostly I like to be by myself. Other children don’t always play my games in the right way and that can make me pretty cross! Sometimes at lunchtime in school if the order doesn’t go properly then I get very confused and stressed. I have been known to hide in bushes to get away from it all when things go wrong. But luckily I have very kind teachers who understand and help me calm down. Sometimes I get overwhelmed at the weekends too. Birthday parties can be very confusing for me, especially if they are very loud and I get too hot. I have friends that I have known since I was a baby, and their Mummy always checks with my Mummy to see if a party will work for me or not. People who understand my sensory issues are my Mummy’s favourite type of person, especially if they bring wine.

Before I know it, it is bedtime again! I like bedtime because it is always the same. In my bedroom I have a weighted Thomas blanket and an elephant light that shines stars on my ceiling. I lay on my big bunk and read my books. Sometimes Mummy and Daddy call up to tell me to read them a little bit more quietly because I love to shout my words out! I love reading, and I am very good at it. But sometimes when I close my book I can still see the characters chasing around in the dark. Sometimes characters from lots of different books come out at once, and that is SO funny! Piper never wakes up when I laugh at the moving pictures, because we have shared a room since she was a baby and Mummy says she likes to know I’m there.

But that’s just sometimes.