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?

PDA

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!

 

information

pdabox4

 

 

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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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Howdy!

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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