A journey down Diagnosis Lane.

Hello,

I’m the mum to an almost 4 year old boy who I affectionately refer to as The Monster, and a baby boy who is 3 months old. I’m a long time partner (but not wife as he refuses to put a ring on it) to my other half.

I often get asked how we knew The Monster was different. What triggers were there that made us question his ‘normality’? Well in short we didn’t realise he was different since we had no comparison. Was he hard work? hell yes. Was he challenging? of course. Was he hitting all his milestones? Some but not all. All sounds pretty normal to me. Nobody had ever told me having kids was easy so I assumed this was ‘normal’. The fact I’d managed to eat toast and have a shower which I’d been reliably informed was impossible when you had a small person meant we were winning, surely!? 

It was his childminder who raised the flag. She described him as having tunnel vision and very busy. His speech wasn’t coming, he was super noisy but no words and he was mildly delayed at walking, taking his first steps at 17 months. When she told me in no uncertain terms that he was, quote “hard work” it was music to my ears. I thought all kids were this challenging! And so with that we mentioned it to our GP and the ball started rolling….and rolling….and rolling. Here began what was to become a just over two year diagnosis process. 

In the months that we waited for his first appointment with his paediatrician I raised the flags with The Monster’s health visitors. His two year check was fast approaching and I was now more aware than ever of the things he wasn’t doing. He used to wave but had stopped, he used to say hiya but had stopped. He didn’t have enough concentration to hold a crayon never mind draw a line and he was constantly busy. Sleeping was cheating and being up for several hours in the middle of the night wasn’t an uncommon occurance. Everyone assumed it was normal waking and nothing some sleep training wouldn’t resolve. I finally broke, ringing the health visitors uncontrollably sobbing down the phone after a particularly long stint of about 4 hours broken sleep a night. They sent someone around that day. But they still didn’t get it. The boy did not sleep! This was to continue until the actual day of diagnosis when I was finally granted the magic potion, melatonin. Hello sleep…oh wait, hello newborn baby! 

At the first paediatrician appointment I was asked a whole host of questions whilst The Monster ran rings around me. He turned on every switch he could find, played with the taps, banged the window and avoided all toys in the room, obvs. At least he was on form and she could see what he was like. We got refered for a hearing test, a speech and language appointment and for an epilepsy test since he was having frequent episodes of staring into space. We waited so long for these appointments to come through that I arranged the hearing test and contacted a speech and language therapist myself. Eventually he had his epilepsy test and it came back normal. After over 18 weeks we still hadn’t heard anything for the other follow-ups so I contacted the paediatrician to find out what the blooming heck was going on, only to be told his records had been archived rather than sent to the relevant departments. Furious. Lucky I had been so pro-active or he could’ve been lost in the system forever. By this point I already had a speech and language report and he was undergoing more hearing tests which at least meant we didn’t have to start afresh. I can’t recall too much from the next appointment with the paediatrician other than to confirm that he needed further assessment.

In the months that followed we confirmed he had no major hearing problems that would affect speech. He had an NHS speech and language appointment and he was observed at home before being refered to the multidisciplinary team for observations which would ultimately lead to a diagnosis.  

I did my homework. I read and read and read about autism, I completed countless quizzes online and I watched The Monster a lot. I did all this in secret. I was plagued by guilt for looking so much. What if he wasn’t autistic, what if he was ‘normal’ after all? 

Communication was becoming increasingly difficult. He was growing physically but mentally and emotionally he was now much behind his peers. He still didn’t talk, he only just started waving and he couldn’t nod to indicate if he wanted something or even if he liked something. We started signing and amazingly he picked up a few. Progress at last. His behaviour was at times uncontrollable and I began dreading going to new places. On one occasion before diagnosis I apologised about his behaviour and said he was autistic. That was the first time I used the ‘A’ word to anyone outside my circle of friends and family. He wasn’t even diagnosed. He had tried to nick someones mobility scooter so I had to say something! I had a lump in my throat the size of a grapefruit and I cried all the way home. 

Time went by and I had it all but confirmed that he was autistic. I was relieved when the assessments came around. Another step closer to it becoming formal. But what if they didn’t see what I saw, what if in the hour a week that they observed him he was on good form, what if he wasn’t behaving autistic enough!? 

The assessments came and went and finally D Day (diagnosis day) loomed. My partner and I were handed a 13 page dossier before entering the room. It was tough reading but also made me laugh out loud. They had seen what we see. They had him down to a tee. We entered the room and were granted the sofa whilst the paediatrician and 2 other professionals sat opposite us. Not daunting at all! We went through their report fully before finally being told “He has Autism Spectrum Disorder”.  I think they expected us to crack there and then, constantly asking if we were OK. My feelings? Relief. Sadness. Happiness. Grief. Real.   

It’s been five months now since The Monster was diagnosed. I still grieve for the child I thought we would have. It gets me some days that I may never hear my boy talk, I may never see him ride a bike, have a partner, get a job, learn to drive, leave home. I’ve learnt it’s OK to be sad sometimes and I don’t feel guilty for shedding a tear about it. It doesn’t mean I love The Monster any less. If anything I love him more. He has taught me to always be kind, to be compassionate, not to judge, to be patient and to be a better person. All this and he isn’t even four. That’s pretty epic. 

I no longer feel guilt for accessing support and I can talk freely about his autism without feeling like I am betraying him. 

My name is Lisa and my son is autistic. 

​YOU ARE THE UNKNOWN

You are the unknown in my sons life,

The wait and see, 

The summit of a mountain we are yet to climb,

The thing that needs so many questions, yet gives no answers.
You are the thief of my sons voice,

The reason he can’t tell us he loves us,

The fidgety cuddle,

The line them up, tower them up, break them up,

The not always recognised disability. 

You are the destiny to our lives,

The unstopabble force,

The energy that never burns out

The bounce as near to the edge as you can,

The countless hours of laying awake in bed.

You are the most obvious in a crowded room, 

The unstoppable tears falling,

The worry for the here and now,

The worry for the future,

A spin, 

A flap,

A grunt,

A sign,

The hide under the covers and get away from it all,

The squeal at the top of his lungs,

The uninvited guest who turned up out of the blue,

The re-writing of our “happily ever after”
Autism, you are the unknown. The most unknown member of our family yet you’re welcome to take us on our journey.

Why helicopter parenting is absolutely necessary in our world…

We live in a world where everyone is quick to judge and everyone has an opinion and is keen to express it. This is especially true when thinking about parenting. Breast feeding, bottle feeding, stay at home parent, working parent, 1 kid / 10 kids, single parent, same sex parents. You name it people judge you for it. 

I’ve read a couple of blogs recently where so called helicopter parenting comes under fire. Dr. Dunnewold PhD says, when referring to this style of parenting with toddlers…

“a helicopter parent might constantly shadow the child, always playing with and directing his behavior, allowing him zero alone time”  

I’m here to defend why we have to helicopter parent our child. You simply can not judge this style of parenting for every kid. The Monster is autistic. He needs to be hovered over.

We will be the ones hovering over our child at the park, chasing his every move and being in his shadows. 

Why? The Monster gets so excited when he sees people on swings that he thinks nothing of running in their path, he could be knocked over by them causing significant injury. He picks things up off the floor he shouldn’t and wouldn’t think twice about putting discarded food / drink in his mouth, or anything else could also get put in his mouth due to his sensory needs.  He runs everywhere in an uncoordinated manner and frequently needs peeling from the floor and dusting down after a fall. His attempt to make friends often involves pushing other children, understandably this doesn’t go down well with said children or their parents. He doesn’t understand park etiquette; queuing for the slide? Why do that when he can push himself to the front knocking down whoever is in his way. 

To make the park an enjoyable visit for everyone, we will follow him, play games with him and teach turn taking. We encourage his independance and follow his lead but we will be in his shadows and guide him when necessary.

We will be the ones not letting him walk down the road (path strictly speaking) without either a tight grip of his hand and / or reigns on.

Why? The Monster has absolutely no sense of danger. He also has very selective hearing and will most often not respond to being told to stop, wait or walk. He would think nothing of running into a busy road into oncoming traffic.He will not just walk alongside us, instead he runs, opens and closes neighbours gates, attempts to touch all parked cars and if he sees our car the other side of the road he would run over to it regardless of what’s in his path. 

It would be nice to be able to take a leisurely walk where he could run to the next lamppost and wait, or run a stick along a metal fence, or take his scooter / bike to the shop but he simply can’t be trusted to do any of these things without us being in physical contact with him. I would consider one of those retractable dog leads if I could get away with it 😁.   

We will be the ones not able to relax even in the confines of your house.

Why? There is a running joke amongst family and friends that there is baby-proofing and then there is Monster-proofing. I am so on edge when at peoples houses that I rarely get to have a focussed conversation. He will play with your phones, pull over your ornaments, turn over your TV, destroy your CD / DVD collection and your DVD player when putting several in at a time, he will drink or knock over any cups / glasses, he will put anything that fits into his mouth.  He can’t do gentle, so even his attempt to look – with his hands in typical kid fashion! he is likely to damage / break your belongings (RIP TV number one). He will turn on your cooker, slam your doors, go in your wardrobe, grab your hoover and flail around the house pretending to clean without a care for what he breaks in the process (RIP TV number two),  he will love playing with your housephones, especially when they make a noise. He will yank at your blinds and wrap himself in your Laura Ashley curtains. He will run your taps, bang his hands on your windows, climb on or even in your furniture and go around turning your plug sockets on and off. And that important mail on the side? Yeah that’s probably been shoved back through the letterbox all screwed up and ripped. Those toys you got out for him to play with? They’re still neatly where you left them when we leave, natch.  Nothing is safe. I have to do a risk assessment in every house we enter, often moving your belongings out of reach. 

Of course, these are extremes and in familiar environments we can relax a bit. They are real life examples but don’t worry, they didn’t all happen in one day! 

Helicopter parenting still a bad idea? I didn’t think so. Hopefully we can relax this style of parenting as The Monster gets older. We want him to be independent, we want him to grow, to flourish to experience his world without us in his shadows but right now he needs us to guide, teach and protect him. So for now… 

We’re the pilot and he’s the co-pilot!

Is it OK to hate my child’s autism? 

I love The Monster more than I will ever be able to describe. To Infinity and Beyond. To The Moon and Back. I would lay down my life for him. You get the picture. But that doesn’t mean I always like what his autism does to him. Ouch I feel guilty even writing that. 

It’s taken a long time to admit to myself that there are things that I plain and simply don’t like.  What autism does to him. Of course autism isn’t all bad and I wouldn’t change him for the world. If he could have a magic pill to make it all go away I don’t think I would give it him. 

There are only two things that I really don’t like. Only two, that’s not bad considering it has a bearing on his whole being. 

  1. Speech. I hate that it has ripped away the ability for him to talk. I don’t know if this is forever but I am a realist and I know that he perhaps won’t ever talk, at least not like a ‘normal’ person. I hate that I might never hear him say “mummy”, he might never be able to tell me he loves me. Telling us he is hurt, sad, happy etc can be done through other means, i.e. body language, signing etc but telling us why is more difficult. I might never get to hear if he has an accent (although to be honest, who wants a brummie accent 😜). I hate that we might never be able to talk over the phone. I even feel sad that his friends and peers can call me by my name yet he can’t. 
  2. Inability to follow instructions / listen! The Monster does what he wants, when he wants contrary to what we tell him. We are forever giving him instructions, more often than not for his own safety. We yell “slow down” a lot. He runs everywhere. we gasp at all the near misses he has because he is going to fast and not looking where he is going. How we haven’t ended up in A&E yet I don’t know*. I feel like I am constantly giving out a negative vibe since “Don’t do that” and “No” are probably the most widely spoken words in our existence! He doesn’t learn from experience so we have to repeatedly give out the same instructions. For example: “Don’t touch the TV” – he’s already broken two and do you think we can stop him messing with it? Not a chance. The most stressful thing in the world is visiting people and new places since instructions to not run wild around peoples houses, to sit and chill and / or play with toys falls on deaf ears. 

    And you thought sleep was going to be up there with the things I hate didn’t you!? 

    Would you admit to things you don’t like about your child? Does it make me a bad person for not liking these things? I don’t think so, I feel guilt of course but autism isn’t all bad. Challenging yes. Happy, unpredictable, fun, quirky and fascinating. Most definitely. 

    *in hindsight I should’ve taken him to A&E when he found the only bit of metal in a soft play. He fell and hit his head good and proper. Even now, about 2 years on you can feel the lumps on his forehead and if he bangs his head (quite often) it’s a cert it will be in the same place!  

    …And They Lived Happily Ever After ❤

    Like many girls, from a young age I had a fairytale vision of how I wanted my life to pan out. When I looked to the future the chapters to my happily ever after story looked something like this in my minds eye (as a very quick, rough guide!):

    • Relationship
    • House
    • Career
    • Children
    • Children leave home
    • Retirement
    • Travel
    • Children marry
    • Grandchildren
    • Children care for parents if needed

    As I got older I started ticking off some of the major chapters of my story. Life was good. I had the main ingredients for my happily ever after but then out of the blue the story changed forever. 

    So just how much can your child’s autism diagnosis change the story so much? Truth be told, we don’t know how much it will change. He is only three years old. Many, many things could change with his developments, but this doesn’t stop my mind wandering.

    Until D-Day (Diagnosis Day), I had been very short sighted with what impact autism could have on our lives. I was very much focused on the short term looking no further ahead than primary school. Now, I have considered as far into the future as my headspace will let me. These are some of the things that hang over me like a huge grey cloud, they are some of the chapters we don’t yet know about:

    • Will The Monster ever talk? – I have (I think) accepted he may not and if he does, is likely to not have the same level of speech as a typical person. The thought of never hearing my child’s voice (actual words) makes me want to weep. The thought of the frustration getting worse for him makes me want to wrap him in cotton wool and always be his voice. Obviously I can’t do this indefinitely. Even now people probably wonder why I answer for him when strangers ask him questions. 
    • What type of school will he go to? – this is work in progress. Check out some of my other blogs for information on where we are at. When we have a child we never imagine they will need a specialist school and they may need 1:1 support. 
    • Will The Monster be able to lead an independent life? Will he live with us permanently, will he require sheltered acomodation? This is one of the biggest concerns for me and it is very much the waiting game to see what the outcome will be. When we have children we teach them and raise them to be independent. We are doing this from a real young age, without probably realizing it. For example, dressing, eating etc. We are basically training them to be able to live without depending on us. So we can pack them off to university, downsize and get our lives back. Will this ever be the case for us?
    • We know that autism is a life long condition. There is no cure. When we’re long gone, who is going to be around to care for him? Another one that makes me feel sick to my stomach. How will he deal with anything happening to us and what provisions can we put in place to know that he will be OK in the event that we are no longer around? Typically you leave your children your legacy, your estate etc but this won’t be enough for The Monster. What if he doesn’t need bricks and mortar but requires the same structured routine. Who is going to know him and all his quirks like we do? 
    • It dawned on me very recently that my career is over. Or as I’ve told a few people, my life is over. Sounds dramatic but it’s hit me hard and I am struggling with this at the moment. I am ambitious. I am driven. I have so much to give. I want to be successful. I want to work. I want to provide for my family. I want a comfortable lifestyle. I don’t want to be just mum (albeit the most difficult job on the planet). I don’t want to be reliant on the state. But how can I juggle this when wrap around care / after school club likely won’t be an option. Even if it is, will The Monster cope with such a long day? When we have no support network to lean on for regular help and when a holiday club / play scheme won’t be appropriate for the school holidays. Any jobs out there that cater for people like me? I can start at 9.30am (provided we have had no meltdown at school and the traffic allows me to get to work on time), I need to finish by 14.30 (to get to the school pick-up for 15.00, based on a job being local enough to school), I will need all school holidays off. Oh, and I will probably need a fair bit of time off for appointments, therapy sessions etc. 
    • Me time / us time. Will we ever get the chance to travel as a couple again, will we ever get to enjoy just a few nights taking time out. Will we be able to retire (probably not based on the above!). 
    • There is a ridiculously scary statistic that 80% of couples with special needs children split up. They don’t make it. I couldn’t do this without my sidekick. I’m determined not to be part of that statistic but this puts into perspective the added pressure we’re under on a daily basis.

    Our story so far has taught me that you’re only ever a chapter away from your story changing forever. Having a child with autism changed ours. It is going to be full of adventures, trials and tribulations but ee by gum it’s gonna be the best book ever. 

        Never let anyone dull your sparkle. 

        I need to do this today. Let me explain, this week I have visited a special school for autistic children as part of my due diligence in shortlisting suitable schools. I have also had our first meeting with The Monster’s Educational Psychologist today. Such events are emotionally draining since there is a constant reminder that your child is different and the nature of said events tends to focus on all the negative aspects of your child. This mornings meeting alone was 2 hours of discussing what I find challenging, what my concerns are and a whole host of systems and processes that both I and the nursery need to work on to improve The Monsters communication skills amongst other things. It’s hardly surprising I left the meeting with a headache and as usual after these kind of interventions feeling a bit sad. He really is different to a neurotypical child, something I forget for the most part as I tend normalise Everything as I know no different.

        So, right now I need to shout from the rooftops some positive things about The Monster. There are obvs, a whole host of things I could choose but I’m going to try and whittle it down to five. After all nobody likes a bragging parent! 

        1). Laughing!  He has a number of different laughs that brighten up the most rubbish day. There’s the uncontrollable laugh, this one is my fave and the most spontaneous, it’s normally when he is being tickled, or when he is making you laugh. Then there’s the mischievous laugh, this is probably the most staged laugh you have ever heard. It is loud and in short bursts, often done when slamming a door in your face…because that’s hillaire! There’s the delighted squeel, where he, as it says on the tin, squeels! The sound of The Monster laughing is my most favourite sound in the entire world. 

        2). Water! He is ace at swimming. He started swimming lessons at 10 weeks old and has gone weekly ever since. Actually it was at one of his first swimming lessons that I had my first ever “proud mum” moment. He loves nothing more than putting his head under water, so he’s pretty amazing at diving in, swimming under water, collecting diving rings etc. It’s not just swimming he loves, it’s water in any shape or form. Washing up, having a shower, water play, drinking water, puddles. If there is an opportunity to get wet, he’s there with bells on.  

        3). Good manners!  He’s super polite. For someone who is non-verbal he is pretty darn good with his P’s and Q’s. He signs “Please” and “Thank you” in context. As an example, he likes to watch YouTube videos on my phone in our bed when he gets up. I will often wake up to a phone being held on front of my face and him dramatically signing please and thank you. This probably sounds minor to a parent of a neurotypical child but this is fab communication for him. He says sorry (well he gives a big cuddle) when he has done wrong. He blows kisses and he never fails to make us smile on a daily basis with the way he communicates to us.

        4). Entertaining! He provides hours of entertainment. What I would give to spend a day in the life of The Monsters head. I could watch him for hours. The concentration on his face when he is lining his cars up and pushing them around the room systematically. The way he is intrigued by how everything works and when things don’t work he wants to fix it (he thinks you fix everything with a screwdriver), his fascination with technology / buttons / cause and effect. His quirky routines and ways of doing things. He’s a fascinating little boy and life is anything but dull when he’s around.

        5). Happy! Everybody loves him. It’s clear to me that he is well liked by his peers, despite his differences. I love watching him in stealth mode when I pick him up from nursery, one of his little pals adores him and gives him oodles of cuddles and really looks out for him. I’ve never felt that he has been excluded and I believe this is testament to his jolly personality. I am super aware that this may not always be the case and I dread the day, if it ever arises that he doesn’t get invited to parties etc. Not that it would phase him in the slightest, he is genuinely one of the happiest children I have ever seen.

        So there you go, there’s five positive things about my beautiful boy. Wouldn’t it be lovely to sit in a room with people and talk about all the things he is good at doing and all the nice things about him, the truth is though we would need a lot more than a two hour meeting for that ❤. 
         

        Christmas 2016; A sensory delight.

        Preparation is the key, right? For most what does this mean? Buying presents early, getting the food shop done before the 24th and making sure you have enough wrapping paper so there are no last ditch attempts at midnight Christmas eve? Preparations in our house were a bit different. They involved priming The Monster about Santa, talking about the big fella for weeks in advance. Putting up the decs late for damage limitation and keeping things really simple. This year I wanted him to “get it” a bit more. It was his fourth Christmas and other children his age were so excited. I Learnt a lot, thankfully, just before the festive period about how this time of year could be terrifying for people with autism and sensory processing disorder and reeled in my perhaps selfish desire to want to go all guns blazing before it was too late. Let’s look at some of the features that make a Christmas and un-pick them from an autistic, or our monster’s point of view:

        Santa: a larger than life guy who dresses in bright red, breaks into your house and delivers presents to children who are on the good / nice list. 

        He’s sounding pretty terrifying already and I don’t need to see facial features to help determine someone’s emotions. I can hear in his voice that he is jolly. I can’t see his mouth nor his eyes and most of his cheeks are covered by a huge thick beard. I’m not deterred because aside from his face which I mostly rely upon to read emotions, his other body language tells me this man is safe. For any child, autistic or not Santa can be pretty terrifying! I suddenly thought that being autistic must be like walking around in a world full of Santa’s, people unable to read emotions using the facial features that we rely upon daily to know if someone is happy / sad etc. 

        We take The Monster to the same department store each year to visit Santa and this year was the best yet. He walked in, looked stunned that the guy out of his books and on the TV was sat there, snatched his present off him, played with the camera and equipment and then tried to gatecrash other kids visit. No tears but will need to work on better manners for next year!

        Christmas tree: A huge (normally) green spiky tree that goes in the house, often in a space where something else normally goes. Covered in an array of coloured baubles, tinsel and lights.

        Pretty huh!? How about completely overwhelming for folk that have sensory processing issues. I don’t think The Monster was upset by the tree but rather intrigued. He wanted to touch it and pull at it, making a beeline for particular decorations and lights. I’d been forwarned by nursery about how he “helped” put the tree up and I had been witness to him “helping” when collecting him. Hence our tree going up late. Ours survived but Nanny’s tree was victim to a fall at the hands of The Monster. Order and routine is a large part of many autistic peoples lives and having a tree pop up for a couple of weeks can be super disruptive. 

        Presents: products of all shapes and sizes, disguised by being wrapped in brightly covered crinkly paper. Mostly full of welcome surprises – but not always.

        The Monster has never been one to rip into presents. In fact this year is the first time he has ever opened presents by himself (with a bit of encouragement). In The Monster’s case the act of opening a present isn’t to be rushed. In previous years he has had unopened presents as late as June (before you assume, he is not a spoilt child with loads of presents!). I was keen that any presents he had this year were opened on his terms, when he was ready to. It took about a week, opening a couple a day but they are all done! 

        I’ve heard about people buying the most inappropriate gifts for autistic children and fortunately we struck gold this year. The most thoughtful gift winner goes to my parents who got him a box of sensory based toys and included things like a harmonica, chatter teeth, oil filled egg timers, a sensory light that flashes all different colours, a maracca amongst other goodies. All relatively cheap but involved a lot of thought. You have to pick your moment to get the best out of him with it all but it provides a lot of sensory stimulation and learning and will work wonders for our 1:1 time. I would urge anyone that is buying for an autistic child to find out what their interests are etc, the monster has been given many gifts in the past that he simply won’t benefit from as he is either not there developmentally or he doesn’t have concentration for. Some old presents also haven’t stood the test of time because The Monster is so heavy handed. Because of his SPD he doesn’t always understand the art of being gentle etc and having to throw away a favourite car because it’s wheels have fallen off isn’t cool. I imagine this will get harder as he gets older and more attachments are formed.

        People: crowded spaces, family, friends and more visits to people than  would ordinarily be achieved in 6 months crammed into a 6 day period.

        It’s Christmas and everyone wants a slice of the action with The Monster (totally understandable, he is awesome after all). I was super proud of how well he adjusted to being in up to four different peoples home in a day. Different trees, lights and presents in all places and a different set of rules in each house! It’s OK to play pretend phones in one house but this can’t be replicated in everyone’s – taking off with the cordless phone of an 83 year old is not the done thing! It’s OK to change the channel of the TV at one house but don’t expect the same appreciation if you try turning over at someone else’s whilst mid-programe. It’s quite a mixed set of instructions that if you think about could be confusing. 

        I find it stressful taking The Monster around visiting people. He is difficult to manage and not everybody “gets” him. He is a live wire and if you expect a relaxed visit where he will sit down for even 30 seconds you are mistaken. Instead he will rip through your house like a whirlwind, eat all your chocolates (and anything else he can get his hands on), pull your beloved cats tails, put finger marks over your TV and windows, post anything that will fit through the letterbox, and he will even pull the blinds out of the window if you get him excited enough! I leave visits feeling drained and stressed 99% of the time. The Monster generally leaves feeling wired. Something we have to deal with in the days and weeks that unfold as he processes everything, generally in the middle of the night. 

        Sleep: A period of rest and a time to recover from the day.

        I know, I know. I always bang on about sleep! Maybe if I was getting some I wouldn’t need to! I fully expected The Monster to regress over the festive period. Taking into account all of the above then it is understandable and true to form he didn’t disappoint. In hindsight we should’ve contacted his paediatrician prior to the holidays to get some melatonin but stupidly we didn’t. As a consequence he would wake for hours at a time during the night. One night he got up for the day at 2am…..2am!! no further sleep required! There was a time not all that long ago that I would be going to bed at that time! At 34 weeks pregnant talk about less than ideal and there was no escaping it since he was in the same room as us. The one and only benefit of 5 nights with hours upon hours of broken sleep was that one day he had exhausted himself so much that he slept for 14 hours, that is an insane amount of sleep for him and rather gutting for me, my unborn child had other ideas about me following suit! Now, 4 days into the New Year, we are slowly getting back on track. Still the wake ups but less frequent and for less time. 

        So, how was our Christmas taking all of the above into account, plus the extra calories, extra travel, extra daddy time (he wangled 17 days off!) and extra Monster time (no nursery)? Well, I couldn’t be prouder of my boy who on the surface of everything appeared to take everything in his stride. He conformed to everything thrown at him and could almost be mistaken for a neurotypical child…in a hyperactive, non-verbal, crazy kind of way! 

        Things did take it’s toll though through ways he can’t control and by means which I am still learning about. Part of his persona is his need for sensory feedback, he seeks this from a lot of things, for example he craves rough play because he likes the feeling from it, he shouts in an environment that echoes because of the noise he hears back and to put it bluntly is heavy handed because he doesn’t know what pressure to use on things. He flaps his arms, spins and scrunches his eyes closed whilst shaking his head or walking because he enjoys the feeling known as feedback that it gives him. 

        Over Christmas his arm flapping became excessive, when excited he flapped his arm like a chicken flapping it’s wing, he walked on his tiptoes enough others to notice (one of the classic signs of autism) and the thing that I found most distressing was his middle of the night routine of pulling his duvet over his head and entire body, not leaving so much as a toe uncovered. He would wriggle and writhe under the covers desperate for some relief or release of something, I don’t know what but whatever it was it wasn’t working. He did this for hours at a time and nothing we did could comfort him. We tried deep pressure, huge hugs and wrapping ourselves around him to give him the feedback he needed but it didn’t work. We were helpless, the duvet was helpless, everything was helpless and it made me sad. Moving into this year, I am going to do all I can to understand him more, to understand others more and to understand the fascination that is autism and sensory processing disorder. The more I Learn the more intrigued I am, I hope through our journey you learn something too, or perhaps you can share your experiences.  Buckle up, come along and enjoy the ride!