Our story…just keep on keeping on…

Our Story

We brought Wee Man home from hospital when he was three days old.  I remember a very proud Monz Man turning up at the hospital with the car seat, nervously strapping Wee Man into it, then gingerly walking through the hospital to the car with our precious bundle.  I was waddling behind desperately trying to keep up, then quickly thought better of it when a stitch twanged – eek!!

Early days

We drove home feeling every single bump in the road and adhering to every speed limit for the first time ever quite possibly!  He was just too precious to take any risks with…still is.

The first week at home went relatively smoothly – well, I did get told off by the midwife on day four for letting Wee Man sleep for five hours straight and not waking him up to feed him.  However, he’d been awake for the previous eight hours screaming, feeding, screaming, feeding then screaming again…so my instincts kinda told me he was a bit tired and so the hell was I!!  But being a first time Mum, I thought I’d done something wrong so took to trying to *make* him feed, even when he didn’t want to.  Well, knowing what I know now, it’s no surprise that he found a way to tell me right where to put my attempts to force feed him – even baby gums hurt when they bite!

Feeding and sleeping were our early main issues with Wee Man.  I know this is very normal for newborns, but there was something different about all this – he was definitely in pain and very unhappy.  I took him to see five different GP’s from the age of four weeks to ten weeks.  Eventually we were given infant Gaviscon to try but this relied on him actually taking the stuff…which he didn’t!  I never realised such a small baby could be so wilful, determined and be able spit so far!

Every day became the same; feeding; screaming; feeding; screaming; thrashing; fighting; trying to get dressed; feeding; screaming; trying to feed myself; screaming; trying to get out the house; screaming; feeding; feeding; screaming; screaming; screaming…days merged into weeks into months.  All the same.  I knew something was wrong, but all the other new mums were complaining about lack of sleep and lots of crying, so why should I think that we were any different?  But we were; I’d watch in awe as their new babies would latch on to the breast, feed peacefully, then fall into a restful sleep…Wee Man was definitely different.

I spent hours and hours trying to console him.  Trying to exorcise whatever it was that was torturing him so.   Monz Man and I would take it in turns to hold Wee Man upright on our chests; this seemed to be the only thing that would soothe him and he could at last sleep.  Many days and nights were spent like this, just trying to help him rest and sleep.  We learned to do everything one handed and to sleep sitting up; hell, I think I even slept standing up swaying a few times!

I recall the moment I finally accepted that he was different to other babies; I’d enrolled us on a baby massage course.  On the first session, we all took up our spots, laid out our warm towels and gently placed our six week old little beauties on them.  Except my Wee Man didn’t want to lay there.  He started to howl.  And thrash. And fight.  The tutor told me to begin massaging him anyway as it would calm him.  Err…well, that didn’t quite work out.  Instead of calming him down, I instead sparked a spectacular sensory melt-down and it was scary…and long; four hours long to be precise!

baby massage

At twelve weeks we finally got to see a wonderful Paediatrician who diagnosed gastro-oesophageal reflux.  She described drugs that would help, but I insisted on a Barium X-Ray before introducing medication to my teeny tiny Wee Man.  Sure enough, the X-Ray showed severe reflux, so I gave up all dairy in my diet and we started on the meds.  They were fiddly and faffy and impossible to get him to take – remember he could spit!!  Eventually he was prescribed Omeprazole, which was far easier to administer, and within a few days, the painful screaming stopped.  But by then, the damage to his feeding patterns was done.  He would no longer take the breast; he would scratch and attack me if I tried to breast feed him.  So, I began a long and torturous nine months of expressing my milk for him.  I won’t lie; I hated every single second of it.  I was beyond tired, but the only time I could sit down long enough to express would be when Wee Man was asleep, and he only slept for an hour at a time.  I wanted to stop so, so many times, but I didn’t.  No one else was pressuring me to do it, but somehow I knew it was best for him and that drove me on.

With all this going on, we didn’t really notice that Wee Man was missing a few milestones.  He didn’t seem significantly delayed at the time, but things that stand out now are that he didn’t smile much as a baby (not really surprising to be honest!); it was difficult to gain his attention a lot of the time; he hated to be held; he was happiest standing and swaying in his playpen glued to the mesmerizing tunes and images of Baby Einstein; he detested being dressed or changed; he didn’t really babble; but he was always very, very active.  He was climbing up the slide in our garden by seven months old, despite not being able to walk until 12 months.  He quickly became known as ‘The Hurricane’ at our antenatal class gatherings due to his intense hyperactivity and general ‘getting everywhere-ness’.

I went back to work in London when Wee Man was 12 months old.  And I was pregnant again…alas that baby, my ‘Little Dot’, was never meant to be and I lost her (I like to think she was a girl) at 12 weeks.

I have to say that first year of Wee Man’s life was desperately difficult.  But in a way, we didn’t know how difficult it was until now, when we can look back on it from a safe distance and remember.  At the time, we thought everyone else was having just as tough a time, so didn’t really think much of it.  It was just a case of keep on keeping on…much like today really.

keep on keeping on

Posted in Autism, Autistic Spectrum Disorder, Early symptoms of ASD, Our story | Leave a comment

How do you function?

I seem to be getting my knickers in a knot over something.  And it’s a strange something to me as I don’t usually get wound up by terminology; I usually just think, “oh ok, you say that.  I say this.  We mean the same thing.  That’s cool.”  But something really bothers me about referring to people with autism as ‘high functioning’ or ‘low functioning’.  But it’s not for the reason you might think (well, not completely).

Wee Man is, I guess, classed as a ‘high functioning’ person with autism.  I’ve never actually been given this exact specification of his diagnosis (which suited me quite fine thank you very much) but since he can talk and toilet himself (mostly) and feed himself (when he can eat), I guess that’s what he is.  But, I actually think that’s quite a dangerous way to define how his autism affects him.  Because there are many areas that he is very, and I’m hating using this term (which is one of the very reasons I don’t think it is a useful classification), ‘low functioning’.  And there are times that he is very ‘low functioning’ in areas that on some days he might be otherwise ‘high functioning’.  I’ve said before he is mercurial.  Well so is his autism.  It never goes away, that’s for sure.  But some days he is more able than others.

We don’t ask non autistic people (or ‘neuro typical’ people as they are often referred to as in order to avoid the term ‘normal’ – I tell you, it’s a bloody minefield of potential terminology faux pas out there!!) whether they’re high or low functioning.  But if we were to then I’m pretty sure that they would say, “it depends”.  I know that, for me for example, if I’ve had very little sleep and a few glasses of wine the night before, then it’s fairly likely that I will be pretty ‘low functioning’ the next day.  Give me a good night’s sleep and a gallon of coffee, then I’m on FIRE (very, very high functioning).  It is not always consistent.

The danger with labelling Wee Man as ‘high functioning’ is that people often believe that he is more capable than he actually is.  He has a lot of language, and he can use it.  But he cannot process a lot of what is coming back at him, and he also doesn’t understand a fair bit of what he actually says.  I’m his Mum, I know this and I behave accordingly.  To a stranger or someone ‘assessing’ him (for half an hour in a doctors office) they see an articulate, chatty, interested little boy, which of course he is.  But they don’t see the daily struggles he has trying to communicate what he needs.  They don’t see the terrible sensory issues that make him beyond hyperactive.  And they don’t see the anxiety that just living in this world causes him.  He has an absolutely fabulous disguise on at times*…

So if you’re keen to enquire about the severity of a person’s autism, I think a far more meaningful answer could be gleaned from asking, “How does Wee Man’s autism affect him?”  Or “How affected by his autism is he?”  Or even, if you wanted to make an observation , something like “He seems quite able, is he like this all the time?” works better for me.  I know I’m not alone in this and many other autism parents feel the same.  The general diagnosis given is now just Autistic Spectrum Disorder, which encompasses all the previously separate diagnoses (Aspergers, Classical Autism, Pervasive Developmental Disorder – Not Otherwise Specified, etc).  There are arguments as to whether this makes the diagnosis more confusing as the ‘place on the spectrum’ is not pinpointed.  But, that’s where you have to look at the individual person, because every person with autism is different and affected by their autism in different ways and by different stimuli…High or Low Functioning

So it’s not so much that I am offended by using the terms ‘high functioning’ or ‘low functioning’; well, maybe I am a little, but it is more that I don’t think they are accurate for all people with autism, at all times.  It all depends.

Wee Man is Wee Man.  He has autism.  He has good days.  And he has bad days.  And that’s all.


*this is very typical of a child diagnosed with Pathological Demand Avoidance (PDA) – they appear very able verbally, but still suffer the same communication impairments that come with autism.

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The time is coming…

I was caught off guard recently.  A few weeks ago Wee Man asked me directly why he goes to the school he goes to (he’s at a special school for children with autism).  My stomach flipped, then quickly sank.  I wasn’t ready for this conversation.  Trying to find the right thing to say, I told him, “it’s a special school darling, for special people.”  He fixed me with a serious look, tears pooling in his eyes and said, “But I’m not special.  I’m just normal.”  At that point, I knew the time had arrived, to begin the journey of telling Wee Man that he has autism.

I’ll be honest with you; the thought of it makes me feel desperately sad.  It feels like ‘this is it’.  It’s suddenly, completely, undeniably real and he really does have autism.  I never lie to my children and telling him that he has autism, means that he really, really does.  autismfamilySo, I guess the time has come for me to finally and truly admit it to myself; my perfect, adorable Wee Man has autism*.  Therefore, are an autism family.  And that’s very OK.

I’ve talked it over with Wee Man’s school and we’ve come up with a plan of how to help him understand what autism means to him, how it affects him and why he goes to school there.  We’ve prepared some visual stories, which will hopefully help him process it all…but do you know what?  I think he already knows.  I think he already knows that he’s different and these differences are becoming more apparent.  He’s a very bright little boy and, for a person with autism, he is unusually aware of the world around him – he just struggles to connect with it.  I often know with Wee Man that by the time he actually voices a question to me about something that has been on his mind, he already has an idea of the answer…

Part of the reason why I think this is that, in trying to prepare him, I’ve been talking about ‘differences’ a lot with Wee Man.  Trying to be subtle, I’ll casually say “oh, look, Little Pink has curls in her hair.  Mummy doesn’t have curls.  We’re different.”  But he will vehemently disagree, shouting “No.  You’re the same”.  And if I point out, “Hey, Wee Man, you’re a boy and I’m a girl.  We’re different.”  He will still disagree, insisting that we are the same.  It’s like he knows what I’m trying to do and what I’m trying to show him…but he doesn’t want to see it yet.

I am certainly not pushing the issue, but I know it is on his mind, so I’m laying the groundwork I suppose, for when he is ready to take it on board and talk about it.  But it’s actually a really important lesson for all children to learn early; we are all different and that is very, very OK!



*I feel I should explain this a little although I will cover it in another blog (it’s not a quick one to explain!).  I know Wee Man has autism.  But to me that doesn’t matter.  It’s a name.  It’s something that makes him who he is.  This will sound very strange to some, but I forget it.  I actually forget my son has autism.  It’s not until we are in a situation that he really struggles with (normally out in public) that I am reminded of his difficulties.  And then I have to remember, understand and accept all over again…every single time.  It’s a very bizarre mindset, but I have very little control over it.  Call it a survival strategy maybe.  Or, perhaps, it’s just me accepting my boy just the way he is…and that’s pretty bloomin’ perfick!!

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Wee Man doesn’t eat well.  Never has done.  And I would take an educated guess that he probably never will.

When he was born, he didn’t have the sucking reflex needed to breastfeed efficiently.  He did sort of get the hang of it but, at around 24 hours old, the gastro-oesophageal reflux kicked in.  From that day forward, our troubled little baby would associate feeding with pain.  His back would arch and he’d scream in agony; he was hungry but he was in pain, so he couldn’t feed.  We finally got the reflux under control when he was 14 weeks old, but by then the damage was done – he then associated the breast with pain and would scratch and writhe to get away from it.  Pretty tough for a new Mum to take, but I kinda knew it wasn’t about me…kinda.

Nowadays, our repertoire of foods that Wee Man will actually eat is very limited…and becoming more so recently.  My ‘old faithful’ the sausage is no longer an option – no idea what happened, but after eating very little BUT peeled sausages and ketchup for over a year, he now won’t touch them.  We appear to be in a food vacuum zone yet again…so, when I hear that almighty but desperate screech, “I’m starving, I want summit to EAT”, I’m sent into a panicking flat spin.  Because by the time he actually realises what he’s feeling is hunger, and is able to vocalise it, he will indeed be starving hungry.  happyhungrymadAnd very, very grumpy; Wee Man can go from happily playing and being a delight, to being a starving, aggressive devil-child in 0.06 seconds – flat!  So, it’s up to me to feed him.  But what do I give him??

Like a lot of issues associated with autism, Wee Man’s ability to eat is closely linked to his anxiety levels.  He can’t be referred to as a ‘fussy’ or ‘faddy’ eater.  His relationship with eating goes beyond choice or not liking a certain food.  The anxiety and fear that comes over him when he’s presented with a new food is just heartbreaking to see; it’s like he’s had a plate of poison placed in front of him, and he is so starving that he desperately wants to eat it…but he can’t – something inside him makes it impossible for him to move that piece of food to his mouth.  Wee Man’s school have been brilliant with helping him become more comfortable around food, but even they report that when a new food is presented, he has to hold an adults hand before he can go near it.

foodnotfunEating is also a hugely sensory experience.  Wee Man has Sensory Processing Disorder which means he doesn’t feel things in the same way that we might.  The smells, tastes, textures, temperature, colours and even sounds of foods and eating is completely different for him.  How exactly, I will probably never know, but I just know it’s different for him.  For years, I’ve tried to identify what tastes and textures it is that he prefers, but he’s so mercurial with his eating, my list is never static or complete.

Another factor that comes in to play with Wee Man’s eating is control.  There are many, many things in his life that he can’t control (not for lack of trying) but he absolutely CAN control what goes into his mouth and what is swallowed.  It’s a basic human function that cannot be controlled by another person.  Wee Man’s PDA (Pathological Demand Avoidance) makes it impossible for him to take on demands, and feeding has to be one of the earliest demands we place on our children.  Hell, you’re not allowed to leave the hospital until baby is feeding properly right?

We’ve had to completely chill out when it comes to food and mealtimes at home.  There’s no pressure, no demands to use the correct cutlery, or sit still at the table.  No, “you have to eat all your dinner or there’ll be no treats”.  I’ll be honest, it drives me nuts, but if Wee Man eats something when he’s wandering around the kitchen stark naked, then I don’t care – he ATE something!  We also let Wee Man eat when he’s hungry, rather than trying to make him wait until ‘mealtimes’…by then he’ll either be past it and tearing down the house or he just won’t eat.  Nutritionally we have to look at what he eats over the space of a week, rather than trying to cram in five (or is it seven now?!) portions of fruit or veg, meat, carbs, blah blah blah, into one day.  That just ain’t ever gonna happen!

What is proving difficult is trying to instil good eating habits in Button and Little Pink.  Button isn’t particularly easy to feed, and I think a lot of that is because he so adores his big brother and copies a lot of what he does.  He’s also had his own gastro problems which I’ll cover another time.  So far, Little Pink tries, and enjoys everything I give her – long may that continue.

Feeding a hard to feed child is such an emotive thing.  As a parent it’s tiring, frustrating, worrying and downright depressing at times.  One of the key roles in my job description as a Mum is to make sure my children are fed well, so they can grow and learn and develop – how can I do this if my child can’t eat?

But it’s not me that suffers – it’s Wee Man.  When you don’t eat, you get hungry.  When you get hungry, you get grumpy; some people more than others.  In my family it tends to be the males who suffer most from the grumpy hunger rage.  Well, guess what?  Wee Man is a male.  And he’s in my family.  And he’s hungry, I would estimate, pretty much ALL the time.  Not hard to see why he’s grumpy a lot of the time too…

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He’s left the room

Wee Man gets lost.  Not physically, although I’d be lying if I said that hadn’t happened once or twice, but that’s for another day.  What I mean is that he gets lost from me.  He becomes distant and impossible to reach.  Locked away in his own little world with tunnel vision and fixed views.  This can happen for months at a time and it is one of the most difficult and heartbreaking parts of autism for me.  I count myself very lucky though as we do get times of lucidity.  Times when I can pull him into our world, and I’m happy to say that these are becoming more common.  In this respect, we are very, very lucky.


When Wee Man is gone, we say he has ‘left the room’.  I feel blind.  I can’t see him.  I can’t connect with him.  I can’t find a way in.  And I can’t pull him back.  When he’s so far gone, it’s like I’m scrabbling around in the mist; I see his form is moving in front of me, just out of my reach, but I can’t connect and I can’t quite see him clearly.

And then, all of a sudden, the mist will lift.  And there he is – my beautiful amazing boy.  His eyes will finally reach mine and focus.  And then we will talk.  He will open up and tell me something.  Or ask me about something.  And I will discover what it was that stole my boy away from me while he was trying so hard to process and understand it.  Recently, he’s been very distant again and I’m sure he’s trying to process a holiday we took in May, but I can’t ask him.  I have to wait until he is ready to let me in.  And I can’t second guess either, in case I am wrong and then inadvertently add to his list of things to think on and worry about!!

Wee Man is at a special school for autistic children.  In that wonderful, wonderful school there are children that are so locked away inside themselves that they don’t speak.  They don’t interact with the world around them in the same way that we do.  And they will need help and support for the rest of their lives.  But that doesn’t mean that they don’t want to interact.  And it certainly doesn’t mean that they want the world to stop trying to interact with them.  These children may not look you in the eye, but that doesn’t mean they’re not listening to every word you’re saying.  They may not flash you a beaming grin, when you greet them, indeed they may not even acknowledge you are even there.  But that mustn’t stop you from trying to persuade them from their world for a few moments, to enjoy something in yours. comeseeworld Just go very gently and respect that they may find your world noisy, smelly, too bright, too dark, confusing and scary.  Because the more they experience your world, and find it a positive experience, the more they may want to venture into it.

I will never, ever stop trying to pull Wee Man into our world, because, although I know he may never stay for long, just having him here for just a few moments is just brilliant.

Posted in Autism | 6 Comments

Let it go

Irritated Monz MumWe’ve learnt that there is nearly always a reason for the more irritating little habits of Wee Man.  We have to be very careful to make sure we identify a behaviour, and then investigate what it’s telling us about how he is feeling, before deciding what to do about it.  If he’s just being a little shit, then we will deal with that appropriately.  But most of the time there is a valid reason connected to his ASD…and no matter how irritating these habits are, we won’t stop him doing them; we just let it go.  Here are a few examples:

What he does:  Sofa diving. 

Cushions flying everywhere, all bent out of shape and tossed on the floor.  Bums and willies wriggling all over the place (he’s always naked – see below).  Monz Man chose the sofa when Wee Man was only a few months old.  It’s something I will never let him forget – who the hell gets a sofa with hundreds of loose, feather pillows when you have kids??

Why he’s doing it: Sensory seeking! 

He’s going mental with his lack of proprioceptive* feedback from his body.  He has no idea where his body is in space, so he’s flinging himself into something that will provide that desperately needed sensory feedback.  I should be thankful it’s not a wall!


What he does: Barnet band mugging. 

He will rip my hair band out of my hair at every single opportunity he gets.  It drives me absolutely bonkers.  It can turn me from a calm, chilled out, happy Mummy who is wistfully floating through the garden with skirts a billowing as a gentle breeze brushes past; to a swirling, swearing devil with a GRAB, RIP, WRENCH, SCREAM (that’s me), as Wee Man has caught hold of my head and tugs out my hair band.

Why he’s doing it: Again it’s sensory. 

He fiddles with things.  When he finds something that satisfies his need to fiddle, he will get attached to it and seek it out.  Previously he had a thing for baby wipes (grab and chew, grab and chew…ewww!) so I’m not sorry that I no longer have to go collecting all the soggy wipes from around the house, but the hair band thing seems to be here to stay.  Part of me likes to think that perhaps it’s because they are mine…but that’s just the romantic in me!


What he does:  Bums and willies. 

Wee Man is naked pretty much all of the time when he is at home.  This has been the case since he was very small, and learned how to take his clothes off.  Before that, he was probably just really, really uncomfortable and clearly grouchy!  Right now, as I’m writing this, he is sitting on the sofa, with his legs akimbo, wearing diddly squat.  The view is truly delightful.

Why he does it: SENSORY (are you spotting a theme here?)!

He doesn’t like wearing clothes.  They actually hurt him.  He also can’t tell when he’s hot or cold and I guess being naked makes it easier for him to regulate his temperature?  I may have made that bit up but who knows eh?!

He also has no sense of embarrassment or of being self conscious.  We have tried to teach him this but naturally he is completely and utterly unaware that being naked in front of someone else is inappropriate.  There is actually a rather beautiful sort of innocence and naivety about him…which will need a lot of protecting.


What he does: Mr bossy boots. 

Wee Man is not shy when it comes to making it clear what he wants and how he wants to get it (or who he wants to get it for him!).  He will tell everyone around him what to do, declaring “I’m the boss around here”.  The way he goes about it will vary, depending on how desperate he is and sometimes, on who he is with; he can be incredibly polite, normally when in a good mood and with friends or people he doesn’t know that well; or downright rude – it’s normally us who cop this one!

Why he does it:  Control.

Wee Man has to feel like he is in control.  It’s not a choice.  It’s a pathological need that he has that makes it almost impossible for him to relinquish control.  And that’s fine – I just need to be really careful and clever with how I manage him.  I’ll admit that being bossed around by an almost six year old is pretty hard to handle, particularly when you’re reaching the end of your tether.  But I’m a grown up and I can take it – I know where this behaviour is coming from and it’s not out of disrespect or lack of manners.  Besides, we all know who is really in charge, right?

There are just a few of our quirky Wee Man’s little habits that drive me to distraction.  Believe me, there are plenty more, so I’ll save those for another time…until then, how’s about you share with me a little bit?  What do your Wee Men or Misses do that drives you insane…but you choose to ‘let it go’?



*Proprioception is the way we can ‘feel’ where all our body parts are in relation to each other (and also ‘see’ them in our mind’s eye), without actually having to touch them with a hand or look at them with our eyes. This sense helps us to plan, to position, and to grade our movements without always having to use vision to check what we are doing. [definition from http://www.sensoryandmore.com ]

Posted in Sensory Processing Disorder, Wee Man Habits | 2 Comments

Control freaks and power struggles

You know what a demand is right?  It’s when you ask someone to do something in a way that makes it clear that you don’t expect it to be refused.  It’s necessary to make demands of our children to give them guidance, to help educate them and, in all honesty, sometimes just to get them to do what we bloody well want them to!!

So what happens when a demand, no matter how small or insignificant, causes crippling anxiety in a child?  Well they’re going to avoid it at all costs aren’t they?


Welcome to the world of Pathological Demand Avoidance Syndrome or PDA as it’s helpfully abbreviated to.  It is on the autistic spectrum, it is just as much fun as it sounds and it is incredibly difficult to manage.  Wee Man has a diagnosis of PDA.  What joy.

What this means is that we have to be very careful with how we go about telling him to do something; from cleaning his teeth, or putting on his pants (never actually managed this one yet!) to being careful crossing the road.  He will avoid, manipulate, distract, kick off, melt down, avoid, AVOID!!  No matter what it is, even if it is actually in his interest to do it.  It really is the most bizarre thing sometimes.

It’s all about control.  He will attempt to keep control of a situation by any means possible.   Whether it’s just making sure he gets into the car in his own way (i.e. walking backwards, with his shoes on his hands and wearing no pants) then he will do this rather than simply follow the instruction to “get in the car now Wee Man”.  If he’s done it in his way, then he has kept control and that’s ok for him.  He can also be incredibly manipulative and clever about getting around doing something he’s asked; before you know it, you can get completely tangled up in a 10 minute long conversation about the merits of Spinosaurus over T Rex, and who would win in a fight, when all you did was ask him to put on his coat!?

The strategies we use with Wee Man mainly involve disguising demands.  So, we make everything into a game, a race or a challenge – “I bet you can’t get into the bath before I count to three” for example.  This has worked pretty successfully up until recently – seems as he’s getting older he is sussing this particular strategy and has been resisting even the games.  Another approach that works is to feign helplessness or stupidity (he loves ME doing this one!) – a few weeks ago, I found myself asking him to show me how to get into the car because I’d forgotten how to do it.  I looked like a complete twit but who cares?  It worked!

When he’s very ‘avoidant’ we find that the good old reverse psychology trick works quite well, particularly when he won’t eat.  If I tell him “whatever you do, don’t eat that sausage”, I can be fairly sure he will at least try…

Educating a child with PDA is an extremely tricky business.  Wee Man now attends a county run special school for children with autistic spectrum disorders.  They have a sound understanding of PDA and are able to make sure he is in the best possible state for learning, before even attempting to teach him anything.  It’s a slow process…

On some days Wee Man’s PDA is far more evident than others.  If he’s particularly stressed out or had an upset of some sort, then the avoidance will build up and up and eventually peak in an almighty meltdown.  So far, his pattern has been that he gets a bit easier after this explosion – I’m waiting for one to happen at the moment actually as it’s been a tricky few weeks.

There are many other children with PDA who are desperately disabled by their pathological need to avoid demands and maintain control – many cannot attend school at all and are home schooled by their parents.  Although Wee Man’s PDA tends to fluctuate, so far it has been manageable.  This could change as he grows up and increasing social and educational demands are put on him.  We just don’t know.  But I can tell you this; he’s very stubborn; he’s one hell of a leader, and can persuade pretty much anyone to do anything for him…I can certainly think of a few occupations where those skills are required!






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Our story…in the beginning

Our Story

I often get asked when I knew that there was something different about Wee Man.  I can pinpoint it to the minute pretty much, although at that time I didn’t really know what was wrong, I just knew that something wasn’t quite right…

Wee Man’s birth was tricky.  I had tested positive for Group B Strep during my pregnancy, so when my waters broke, I had to go straight to the delivery suite.  There they told me that they would induce me immediately as the waters around the baby would protect him or her (we didn’t know) from potential infection, but not for long.  My instincts told me to resist the induction as long as possible, and I negotiated an hour’s reprieve.  So, off I went jogging and star jumping around the hospital.  I trotted up and down the stairs so many times I lost count, but nothing was happening – no contractions, no signs that things were getting going so I had to admit defeat.  They hooked me up to the Syntocinon drip, then BANG!  Within minutes the contractions started and we thought it’d all happen quite quickly from then.  It didn’t.  After eight hours, I had an epidural* and was able to relax for a bit.  Then push for an hour.  Then panic for a bit.  Then push a bit more.  Then panic again, as the room started swarming with doctors and midwives shoving papers in my face to sign and tugging at my jewellery to remove it quickly.  “Your baby is stuck”, they told me.  “We need to help baby out”.

Baby boy

Monz Man vanished as I was scooted to the operating theatre, only to reappear wearing blue scrubs and looking mighty dashing!!  And then it did all happen very quickly; two more pushes and a tug with a plunger (OK technical term is a Ventouse but it does look like a sink plunger) and out came baby!  Monz Man was so overcome that he forgot to tell me what variety it was – Wee Man was in my arms before anyone told me he was a boy.  He was a bit blue and had a very funny shaped head, but was hollering loudly and looked perfect to me.

There it was; the holler.  I know now that was the first sign for me.  The cry that didn’t tell me anything.  And it didn’t stop.  Not for three hours.  Now, I know most babies do cry after being born – hell, who wouldn’t?  It’s pretty traumatic for all concerned.  But this cry was different; it was in pain; it was confused; it was scared; it didn’t like what was happening and it couldn’t tell me.

Wee Man didn’t feed well – he still doesn’t.  He didn’t seem to know how to suck.  That most basic of human instincts, needed for survival, and he didn’t have it.  The midwives were pretty useless and just kept shoving their fingers in his mouth “to get him going”, then shoving his head at my boob, “nipple to nose, firm and fast”.  Now I don’t know about you, but that certainly wouldn’t entice me to want to feed and in the end I had to tell them to bog off – very politely you understand.  They just weren’t feeling what I was or seeing it in the way I was; his head must have been sore after being bent into a cone shape; his neck must have hurt after being stuck in one position for 20 hours and he just didn’t know how to SUCK!!  So, after I told them to go, we just got on with it – lots of skin to skin and cuddling, and I tried and tried.  Slowly he got the hang of it and was taking some milk.  Interestingly the hollering lessened, with the fewer people coming in and fussing over him and I started to think, perhaps I was getting the hang of this…

But no – at 24 hours old, just as lay him down on his back for the first time (had been told off by the midwife for putting him on his side which I was doing instinctively), the hollering came back – with a vengeance!  And it didn’t stop.  For eight hours…the only thing that finally stopped him was a tight swaddle and laying him ON HIS SIDE!  Again, I told the midwives to bog off, not quite so politely this time.

We left the hospital when Wee Man was three days old.  I wasn’t ready to go if I’m honest.  I still didn’t understand what he was trying to tell me.  I couldn’t hear all those different types of cry that we were told about at antenatal classes – you know, the one that means “I’m hungry” and the one that means, “I’m tired”, and the other one that tells you “I’ve just crapped in my pants and I don’t like it so change me quick”…

He had just one cry.  That holler that told us nothing, but meant everything.


*  Just a quick piece of advice here;  if you’re ever having an induction by drip, please have an epidural AT THE SAME TIME because it bloody hurts – I have had a few natural labours to compare it to so I am talking from experience!

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Welcome new visitorsHi newbie visitors (how very exciting to actually have visitors!),

Just a very quick note to say that this is all a work in progress – please bear with me and visit me often.  I’m really hoping that I can make some sort of a difference to my readers, even if it’s just to give you a bit of a giggle now and again…

See you again soon!

Monz Mum

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Doing my bit

What can I do?  What CAN I DO?  I need to do something – to contribute something to this new world of autism that we’ve found ourselves in…

When we first got our diagnosis of autism, we were lost.  There were no maps.  No signposts.  Nothing.  Just an uber ‘helpful’ doctor telling me to “join the National Autistic Society”.  She then wished me “good luck”, with a sympathetic sort of head-tilt that I’ve now come to recognise only too well.

Autism awareness

So then what?  Well, me being me, I got on Google.  And joining forums.  And buying books.  And basically turning into a one woman ASD info junkie!  But it wasn’t easy – there were (and still are) so many things to think about and look into; therapies; education; understanding; explaining; ‘treatments’; respite; benefits; the list goes on and on.  But, and I think this is the most difficult part of the process, I had (and still have) no way of knowing what the future held – not just for the Wee Man, but for me as well.  Could I cope with this?  Could I ever feel like I was prepared enough to help these little people (there may be more than one kiddo with ASD) as much as they really need me to?  And, how the flip will we cope as a family??  Well, I can now say that yes, I can cope.  And yes, I can give them everything they need.  And, as a family, we are stronger than ever.

It’s not always easy, in fact it’s very hard a lot of the time, but WE CAN do this.

Whether you have a child with autism or if you care for one, or even if you just want to learn more – you can help make a difference just by trying to understand that the world they experience is different to yours.  That’s all…


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