PDA and Sensory seeking

So I’m learning that the littlest (now seven!) rascal is a sensory seeker.  I get this, mostly.  But I find it a complicated task to piece together the bits of information you get from physios, occupational therapists, speech therapists, consultants and of course Pinterest!

I learned a long time ago from a lovely physio that the rascal has difficulties with his proprioception which I understood to mean that he doesn’t automatically know where his body (or a part of it) is in relation to anything.  He can learn to judge how far a way a cup is, the force needed to pick it up and the distance to bring it to his mouth, but it’s not the seamless process that people typically experience.  This has always made sense to me, for our boy.  He can’t walk across a carpet of children sitting with their legs out- he just can’t judge where to put his feet to avoid others.  He struggles with writing and getting the pencil to move against the paper with the right pressure.

But there are so many other terms and discussions, it can be hard to see where something is the same issue but with a different or more sophisticated name and where something is a completely different, co-existing condition.  For example, I describe him as hugely dyspraxic.  This relates to the proprioceptive difficulties, but is it the same thing?  He has problems with motor planning, that’s clearly the same in some ways.  Although I can see the connections I still separate them in my mind, I think, so my best motor planning example is getting out of the car.  I say to him, “come on now, out you get” and if he’s not focussed he dawdles and ultimately has a meltdown and won’t move.  When I started to watch his behaviour more closely I could see that it isn’t obvious to him that his legs need to come out first, to support his body and then the rest of him can follow.  He looks at the situation and knows he wants to be out of the car but feels frightened when he leans his head out first and recognises that is not the way to do it.  This is different from my proprioception examples, but still obviously connected.  I think I find compartmentalising helps me to feel that I have tool kit of strategies that I can call upon to help in a given situation.  Generally, I try to approach every situation by breaking down what the parts are and giving him small instructions, hoping to give him the confidence to act independently, but inevitably I don’t always succeed.

Anyway, my thoughts today have wandered to sensory seeking.  I’ve always been confused by this.  From the early days of the proprioception understanding I was given huge lists of things to try with the rascal.  Some of which were deep sensory stimulation, rolling in sleeping bags etc.  But I always felt we were treading a fine line between helping develop proprioceptive understanding and over-stimulation.  I actually felt that most of his meltdowns were when he was over-stimulated and therefore I avoided some of this work.  Over the years I’ve gradually realised that he does have these needs and that there are different types of sensory input, but honestly I still don’t fully get it.  For example, as a general rule he is at his most calm and happy on the beach.  I always feared the beach, thinking it would be too much (because so many other exciting activities are too much for him) but the last two summers we’ve spent as much time as we can there, because he is just so relaxed.  I drive home, scratching my head, wondering how this busy day, in a different environment with wind and sun, grainy sand, long walks, cold sea (always in Wales!) and clingy clothes has led to the happy relaxed child in the back of my car??  A play in a muddy park with some similar sensations leads, more often than not, to trouble.  I don’t have all the answers but I do feel positive that I’m noticing more patterns and can attempt to adapt our lives accordingly.

In a round about way, I’m rambling my way towards the thought of PDA.  The role play element of PDA is a huge factor for us.  There’s almost always a pretend trip or event on the horizon which the monkey is planning for and talking about incessantly. He might be planning moving house, or going on holiday.  Usually the role play is extreme, we’re not going on holiday to Italy, we’re moving to Italy.  or we’re not going to the beach for a day, we’re going for 8 months.  Over Christmas and in the run up to the birthday I’ve noticed the role play is less pretending and more  preparing for what’s going on in the season.  So he’s role played waking up on Christmas morning a million times and opening presents and preparing the lunch; similarly for his birthday.  This has sort of not left room for more fanciful pretend play.  There’s so many angles to it, you could describe how that shows his anxiety about the events to come, which undoubtedly it does, to an extent, but mostly he really genuinely seems excited and wanting to live the moment over and over.

The morning after his birthday was a difficult one, he woke at 5.30, put on all the lights and was banging around, when I approached him he was beyond uncooperative and unreasonable, contradicting blatant facts and clearly distressed.  We worked through it over the first few hours and he managed to communicate that he was upset it wasn’t his birthday anymore.  Of course, we can all relate to this ‘low’ after the ‘high’ the day before, but it got me thinking that as well as the sensory seeking, he’s partly ‘thrill seeking’.  It’s the adrenaline of the anticipation of events, real or pretend that he craves and that’s why they get ever more fanciful as he discusses them.  I don’t know what I’ll do with this, but I feel it helps to gently piece the puzzle together and ultimately help him to understand his feelings and how to soothe his own agitations.

A Birthday

No time here to congratulate myself on the successful navigation of a PDA Christmas, survival in the face of huge weight of expectation, grotty colds and vomiting bugs.  No, no, because quite inconveniently, at the beginning of every January the little rascal has a Birthday.  This year he’s seven.  Seven.  Seven feels so grown up.  But of course when you’re in the throes of the big day, it really doesn’t seem 5 minutes since he was born and we were with him in hospital.  How I have managed to age at least 20 years in the last seven remains a mystery, but hey, you’ve got the love the concept of time and all its contradictions.

It’s hard work though.  We were unlucky with the Christmas cold and then the Christmas bug.  Not very festive.  I think the diabetes extends his recovery time, although I’m not sure of the mechanics(!)  So it felt like a full 2 weeks of bleugh… Poor kids and (obviously!) poor us.  It was most definitely not in the plan but, actually, did highlight how good it was that we had chosen to spend the day at home, rather than with family.  We worked to our own needs and that was just what the doctor ordered 😉

Then there’s the post-holiday, back to school drama.  Always good fun.  But weirdly, this time around, the birthday has soothed that a little.  Having something else to plan and focus on seems to have taken his mind off the present.  Not that I’m advocating more frequent birthdays, he was up at 4.15 on the day.  I can’t say he was really being trouble, certainly not in a meltdown way, just so excited and chatty.  The thing for us, though, is that we’re living life of the edge of a meltdown precipice, every minute.  One wrong tone of voice from me and the sweet excited child, sitting up reading books at 4.15am and waiting (mostly) nicely to get up at a more palatable time, will turn into a biting, banging child who wakes the whole household.  So I dig deep for patience, put on my sweet voice and remind myself of years gone by when it was even harder.  And dream of years ahead when it will be even easier…. please!

 

 

KCNQ2

So, a new thing. I had a call from the lovely geneticist to say that after nearly 7 years of all tests coming back negative, No.2 rascal had tested positively for a mutation in his KCNQ2 gene. My terminology is going to be naff but they say it may account for his early epilepsy and ongoing neurological differences. Mr T and I had to go in for a blood test to see if either of us have the same mutation. As I understand it, if one of us also has the mutation it is less likely to be the thing that’s caused the rascal’s condition but if it’s a new mutation, just in him, then they’ll be quite interested. Cue lots of googling around – obviously. It seems like it’s a fairly newly diagnosable (is that a word?!) mutation, so although there may be many people in the same situation there’s not a lot out there about it. I found a few websites: The Jack Pribaz Foundation http://kcnq2.org and KCNQ2 cure http://www.kcnq2cure.org and I tried to join a Facebook page, to no avail. We’ll see what our blood results suggest, but it’s an interesting development. We took the rascals with us today for the blood test, No.1 (who is more squeamish and sensitive) opted to stay in the waiting room but no.2 with his diabetic desensitisation to needles was excited to come and watch the boot be on the other foot for a change!

Christmas preparation – the PDA way

‘Tis the season to be…. role playing.  Well, obviously all seasons are made for role play in our house.  But it’s mid December and we’ve already role played Christmas Day hundreds of times.  In fact, to be honest, I’m not sure I even need to go through with the real thing.  I’ve already been woken in excitement, “He’s been!!”, unwrapped the presents, cooked and eaten the sausages wrapped in bacon.  Hell, just wake me up when it’s New Year!

It is tiring and repetitive but it’s also encouraging to be approaching the holidays with some increased understanding of what makes the little rascal tick.  His contradictory behaviour was always so confusing before.  He would crave the excitement and novelty of a new situation but then shut down when in it.  Or obsess so completely about something new that was about to happen that we were all driven completely to distraction by the time of the event.  So this year I’m ready (and not just in a thoroughly role played way!). We’re staying at home, just the four of us, so that I can plan and be in control of all the elements of the day.  We’re recognising his excitement is tinged with anxiety and helping him work through questions of how the day will go.  We’re scheduling the whole day so he knows what’s next – this is because one of our particular challenges is that little rascal will scan an event/holiday/weekend for a plan and where he finds a gap (e.g. in a week’s holiday if there’s no definite plan for Tuesday)  he will make one up and however possible or practical it is will demand that it is done.  Usually leading to huge meltdowns and leaving you standing there wondering, “what just happened??”  So where we know there is likely to be slightly more anxiety than usual (CHRISTMAS for example!) we are getting wise to this uber-planning.  (My wall planner for the school summer holidays this year was truly something to behold!)  Plus we’re giving him jobs and activities linked to his interests to keep him engaged, this year that will mainly be around cooking which he’s really enjoying.

Who knows if it will work but I feel less anxious on the approach to the big day than I have in many a year, so that must be a good sign 🙂