Accessorise! Accessorise!

Move over Louis Vitton and Prada...I have recently acquired the ultimate fashion accessory.

 

 

Behold...the DNY all-purpose carry all!

 

Perfectly designed to catch and store the most ghastly of throw-ups with a large, easy-to-aim opening and readily disposable container. The product of a spontaneous brainstorming after last Friday's art class, when Sam spewed his entire stomach's contents all over the inside of the car, at the sighting of unfamiliar territory...before I'd even managed to get him out the car. 

 

This was the before picture...I thought it best not to capture the after picture LOL!

 

 

 

Several times over the days leading up to Sam's very first art class, I let him watch a video of children painting pictures, as well as on the Friday morning hoping to prepare him in a way for the morning's planned activities. I knew Sam would not hold a paintbrush, so opted instead for finger paints especially as he seems quite keen lately to try different textures on his hand, even textures which previously freaked him out, like bubble bath.  But of course before getting down to any painting there was the matter of transitioning him from familiar hence safe (car) to unfamiliar hence threat (never before visited home). Transitioning is definitely an issue with Sam at the moment...it's that vulnerable space between the safe, solid chair to the safe, solid floor.

 

My first reaction was to surrender and head our vomit-covered smurf home. But after encouragement from the wonderfully supportive other moms, decided to stay and although Sam refused any kind of painting and moaned occasionally, we spent a good hour just enjoying the other children proudly tackling their activities. 

 

Already caught up in a particularly challenging wave of anxiety, the severe lack of sleep happening in Smurfville is most certainly not helping at all. From Friday evening till Tuesday, Sam's sleep deteriorated from being awake roughly between 12am and 4am to less than two hours sleep on Monday evening. Sam woke just after 10pm and that was it, he bashed himself senseless and to the point of acquiring a few bruises, until just before 6am at which point it was easier to just admit defeat and get up. I was convinced there had to be something bothering him so went off to the doc but Sam received a clean bill of health. Sam's been having some urinating issues again and over the past few days going anything between 12 to 16 hours without a wet nappy has become the norm, despite drinking at least 1litre of fluid every day so I was looking forward to mentioning this at our neuro appointment on Wednesday, but quite distressingly the appointment was cancelled due to some sort of miscommunication regarding Sam's neurosurgeon's availability. We did do a urine test on Tuesday to rule out a UTI, which it did.

 

Another issue I wanted to raise at Wednesday's appointment was the possibility of Myoclonic Seizures. Quite some time ago I complained that Samuel's body twitches and jerks all through the night...his legs, his arms, his hands almost constantly and even his head. So much so that it lifts off the pillow sometimes.  Somewhere along the line I recall the term Myoclonic Seizures being mentioned on one of the SPD support sites. I paid little attention, reassuring myself that even though Sam's only had 5 seizures in his lifetime I would most certainly recognise it if it happened again. Then over Christmas Sam had that lovely little virus visiting his tummy and I awoke one night to him having a very short, but definite, convulsion. The first two convulsions he ever had were febrile convulsions caused by the onset of a nasty tummy bug, almost three years ago to that day. I kept a close eye on Sam for the next few days and decided to go read up on Myoclonic Seizures after all, just in case, only to discover that they are in fact not "seizures" as such, as I  had presumed, but rather a series of spontaneous jerking, etc. An extra bonus was that there are a few video's on Youtube actually showing what it looks like and it pretty much looks exactly like what Sam's little body is doing through the night, which would sort of explain why peaceful sleep escapes him. 

 

So, again, really disappointed that Wednesday's appointment didn't take place :(

 

Finally, Wednesday evening saw us enjoying at least a little sleep. Not a full night's, but there was more sleep than wakefulness...which becomes quite good enough. Thursday morning was Sam's first group outing -  to the Fire Department! Really exciting, particularly for me, as Sam loves doing the "fire engine" sign. Thankfully we avoided vomit for at least the first half hour, although Sam preferred observing the fire engine and the other children from a distance. When the firemen turned the water on, that distance entailed Sam and I having to leave the actual fire station and watching from outside the front of the fire station, through the great big doors. There might have been vomit, but it was just a little...not even enough for me to have to reach for my DNY but easily cleaned up with a wet wipe. That little bit of vomit though was quite a blessing as when rushing to the car to retrieve the wet wipe, I discovered I had left my car door open the entire time. GASP! These kind of little..um...oversights are becoming a bit too frequent. There has been the occasional bottle or phone left on the roof of the car and en route to the Fire Station on Friday I suddenly found myself at the local high school, not too far off my intended destination (barely a kilometre or five) but still just a tad worrying. Surviving on 1-2 hours sleep a night, I would have imagined far more perilous consequences so we're still good for now. And boy is that a good thing, because last night we did another whopping amount of bodybashing from, again, round 10pm till just before 5am. Thankfully Sam fell asleep then for just over three hours, giving us just enough time to make it to physio which lasted all of 20 minutes as Heidi was unable to work with the fearful and fight-or-flighting little dude :(

 



Where Sam is at his most happiest lately...at home, close to the floor, on a soft surface...with an adorable little boy for company

Sam and his "bike" providing us huge amounts of amusement because try what you might, he refuses to sit straight on the seat. As soon as you correct his position, he shifts that little bottom to the left and refuses to ride any other way.

Change

Sam turns five this year. Yikes!
Meghan turns thirteen. Double Yikes!
Mom turns.....mmm, let's just not go there!  #fortyphobia

Since pretty much the beginning of Sam's sensory/anxiety issues I have found myself wanting to homeschool Sam. I take great delight in sharing that before the age of three Sam knew all his numbers 1-20, many shapes, letters a-f and more recently can recognise almost 30 different WORDS from his list of signs.  And these words have no pictures or icons, it is simply a list of 200 words from which he can select several simply by scrolling down the list. And it's not the easy words...it's words like caterpillar, swing, sleep, daddy, mommy, grampa! I love how much Sam absorbed whatever I was "teaching" him and how he thrives on a one-on-one setup.

Towards the end of last year I started having second thoughts. Watching Meg enjoy the excitement of the various yearend activities like concerts and grade results, etc. made me a little bit emotional about Sam not ever experiencing those same things.  Suddenly all thoughts of homeschooling had me envisioning a solitary smurf, humped over his i-Pad, robbed of social interaction and, seemingly, life. Accompanied by an equally solitary, hermit-like,  humped-over mother (hers age-related LOL). I thought about the extra, included therapies Sam would benefit from by attending a school for differently-abled children as well as the possibility of me returning to work to try and keep our heads above water financially. 

Also, and perhaps having had the most impact, I recalled someone making a comment on some or other medium implying that homeschooling was effectively saying that you do not believe your child has the potential to thrive.

Yip. Definitely what had me ever-so-slightly mortified.  Simply because I know Sam truly does have potential, huge unimaginable hoards of potential.  And it would be devastating to have him or anyone else believe otherwise. 

And then the holidays happened. Along with a level of anxiety and distress we have never seen before...and we've seen plenty of both. Apart from the change in routine that goes with no school or work (which I've mentioned before) there were other minor things just as baffling. Samuel stopped pulling himself up on the tv unit, which he used to do all the time especially when watching his favourite dvd's. He became impossible to transition from, say, the couch to the floor. He would just turn around and cling to whatever he could grab in absolute fear. Having him so fearful in his own home is saddening.

Remember the story about the time I hung curtains in our bedroom? Try this one on...

As our lounge is a little quaint, putting the Christmas tree up required the moving of some furniture. And by "some" I mean shifting one sofa a total of about 1.5 metres at a 90deg angle. When Grampa returned from a two week visit with his sister and noticed the change in Sam, he asked if it couldn't perhaps be the shifting of the sofa that was unsettling Sam so much. I said "Nah!"

Yesterday morning I moved the lounge back to it's original arrangement. Instant improvement in Sam's behaviour. The fear is not completely gone, but it is better.

The lil smurfy dude just doesn't do well with change. He doesn't do well with unfamiliar. I tried to introduce Sam into the Sunday School class last weekend.  With the classes not having begun yet, the class was very casual with the other kiddies just playing ball or building blocks...nothing particularly exciting. Of course I planned to stay with Sam all the time. Instantly he started gagging. I tried to distract him, which worked for a little while. More gagging. Twice I left the room to try calm him. But eventually it got too much for him and he started vomiting again.

So here's the thing...Sam in a mainstream school will.not.work. It is not a cop out. It is not a surrendering of his potential. It is not an over-emotional grumbling. It is what it is. REALITY. Putting Sam in a mainstream school now would not be for Sam's benefit. It would be for ours...for the sake of our pockets and for the sake of the "normal" expectations instilled in us for our children, for the sake of fitting in, for the sake of a hundred other things except for the sake of our uniquely designed Sam.

Now, the only doubts I have about homeschooling are really about myself. Having no teaching experience, will I be able to adequately educate Sam? I am blessed to have a good friend who is currently homeschooling both her sons and has introduced me to a homeschooling group. Her reassurances that homeschooling by no means deprives a child of social interaction have been validated almost immediately by an arranged group art class tomorrow morning at 10:30 which Sam and I will be attending (hopefully minus v-wording) and an outing for next Thursday to the Fire Department which couldn't come at a better time as Sam has suddenly developed a keen interest in fire engines.  I have every intention of persevering with the Sunday school class as well and can only pray that Sam eventually starts to feel comfortable there. Taking that Meghan took a total of two years and nine months before she enjoyed her first tear-free day in primary school, I am hoping that by the time Sam is 7 we might have a successfully attended Sunday school class!!!

I am excited about our homeschooling journey. I am excited about finding new and creative ways to teach Sam, knowing that I am playing an active role in helping him be all that he can be. I know in my heart it's the right decision for Sam :) What was that I mumbled recently about how changing the path you take doesn't necessarily mean changing the goal xxx

Progress is a nice word, but change is its motivator.
And change has it's enemies.
(Robert Kennedy)

The Lighter side of Sensory Processing Disorder

Sam's newly acquired aversion to the sound of running water and, more importantly, the sound of running water hitting any kind of surface has become quite entertaining.  Last Sunday Sam had another vomit session at Church (Yes, really #sigh). The first thing we did once he stopped puking was walk him over to the outside tap to try and wash off his hands, hoping to make transporting Pukey Smurf a little less challenging. Well the poor kid jumped a metre high when the water hit the paving outside, almost starting the puking all over again.

 

This interesting new twist has kind of put a damper on my wanting to try Sam with some potty training this Summer.  I thought the least "pressured" step we could take would be to let Sam have a wee in the garden.  Well two major problems with that one a) he won't stand on the grass and b) that would entail him having to tolerate the sound of his wee hitting the grass.  It just ain't gonna happen folks. Quite amusing is the fact that he has taken a liking to having a whizz on the bathmat at night while I am undressing him and the sound of the little pool forming on the mat does not seem to bother him just one bit.  So the only thing I could think of was a fur-lined potty. JUST KIDDING! Well kinda, if I thought it would work I'd certainly try it.  Just for laughs though I googled fur-lined potties and actually found one! Unfortunately the fur would have to be at the bottom as that plastic bottom would definitely make for some serious startling. Nevermind the laundering challenges that would pose, although having to wash the bathmat on a daily basis is not much fun either.  

 

Luckily most of the moms on the Sensory Processing Disorder site have shared that trying to get SPD kiddo's onto a potty is almost impossible so we are being spared the epic fail that would come from fur-lined potties.

 

More seriously though, this SPD thing has us beat at the moment.  First there was RTS and having to adapt to a set of specific challenges.  Then 19mnths later, having just started feeling like we were sort of keeping head above water in the RTS ocean, along came SPD.  There, but pretty much in the background with the exception of some conquerable little quirks like keeping Sam away from sunlight (which caused him to scream as if in pain), making sure his milk was always the exact same temperature, etc etc while we still grappled with the more serious RTS issues like a tethered spinal cord, undescended testes, etc.  Then after that first testicle repair all of a sudden SPD was right up front giving RTS a remarkable run as most puzzling condition.  And now? Now Sam's sensory issues are by far more perplexing than his RTS issues. Why would the SPD issues be troubling us more than the RTS issues? Because, to a certain extent, we are at least prepared even if on a shortterm basis, for what to expect...what to look out for with RTS. But oh my gosh, no such thing with the SPD.  Sam's "symptoms/triggers" are changing almost on a daily basis. It's like having a different "condition" to master every morning, a different little person to nurture and securely guide through each day...every morning. It's pretty darn exhausting I tell you.

 

All of a sudden we are doing loads of gagging and then inevitably, throwing up again. Last Sunday we attempted to sit with Sam in the baby room during the Church service as it was empty.  Sam has not been in there for a while, maybe two months at the most, but there was a stage where that's where we sat with him every Sunday. Everything was going okay until I decided to move from the chair onto the floor with him, again what we would usually do most Sundays. And for some reason transitioning onto the floor has now become a major gagging trigger, even here at home since then. 

The v-wording thing is really hard for sure but Church being a gag/defensiveness trigger? Without a doubt one aspect I could least come to terms with. 

 

And as baffling as Sam revisiting his extreme fear of being moved around (we did this almost exactly two years ago when I struggled to get him into and out of his carseat, etc) is this....

 



 

For the first time in twenty-eight months he is quite comfortable with moving from his knee-walking position into sitting on the floor again..all on his own.  Not only that but about a week ago Sam started standing up, completely unsupported, on the bed.  I've tried desperately to take a pic but I am so scared of losing sight of him and having him somersault off the bed that I haven't quite captured a clear shot yet.  He can only manage about 10-15 seconds but each and every day his balance improves and he can more easily right himself when it looks like he might topple over. 

 

So...to sum it up, having mom or dad lift him from the couch to the floor is an absolute gag-worthy No No! As is running water and the bathrooms and baby room at Church.  But suddenly sitting all alone is like so blasé as is standing up for the first time EVER!  Baffled? Yip, me too!

 

Sometimes I wish with all my heart I could simply ask Sam what troubles him and what I can do to make it better.

 

But I can't.

 

I don't speak Smurf :(

 



One of Sam's Christmas pressies :

 

I don't know how possible it is, but I do wonder if this really inexpensive gift has not contributed to Sam becoming so much more confident with the sitting and standing. Sam does ride the little pushbike quite well, way better than I expected, so perhaps it's possible? Regardless, it is beyond joyful for this Mom to see her little boy cruising around on his bike...just so normal.



 

 

We've made it through a very low-key Christmas and even more low-key New Ýear's Celebration, filled mostly with time at home watching movies, splashing around in the pool. In fact, I was so concerned that the rather hectic change in Sam's routine was causing some of the newer gag-triggers that Sam and I did not leave the house for almost seven days, apart from quick trips down to the Spar and the like.  Well that and the fear of having to add a few more destinations to Sam's list of places he has vomited!!!

 

WISHING YOU ALL A TRULY BLESSED 2014.

MAY IT BE AWESOME XXX

Sleep Wars & V-wording

 

Different for sure is our little smurfy dude.  Still totally thrown by having his little world rudely interrupted by all things Christmas. Up until Friday evening we were surviving on very little sleep, most of the night spent with distressing (mostly for me) bodybashing and a seemingly aggressive itch (without any visible rash to justify it) which bothered Sam for hours, resulting in him scratching his skin open in some places.  By Friday, desperate for sleep, we went off to the pharmacy hoping to fill a longstanding script we have for Aterax, which we first used for Sam when his sleeping problems began but quickly found that, while effective the first three or four nights (as with many meds Sam has taken) the fifth night usually ends in a major fail when the med has the adverse effect and Aterax was for sure one of the most true to this pattern. The pharmacist advised that Aterax has been unavailable for some time but, with it being for shortterm use, suggested some Allergex syrup (Chlorpheniramine). Well Friday night Sam managed eight wonderful hours of sleep, Saturday night nine hours and last night an awesome eleven hours and 50-odd minutes!!! Despite my better judgement, we've gone ahead and tried one more night but regardless, just having three nights of decent sleep has us feeling almost human again. 

 

Sam's current anxiety/sensory mix is still Faverin in the morning and Clonidine in the evening.  Even though the Clonidine doesn't really help hugely with the sleeping issues, the combination of the two definitely makes for a calmer Sam during the day. That is, when we've not upped his social exposure and aren't having a much-needed braai (BBQ) with friends one night, off Christmas lightseeing the next evening and traipsing around the night market the very next. Perhaps three consecutive nights was a bit much for Recluse Smurf and left him pretty much like so today...

 

And with heightened sensory issues comes heightened v-wording incidents. And we're saying "v-wording"because defensive gagging followed by various degrees of v-wording is once again a regular occurence during our day...sometimes caused by my rather slow transition back into being alert for triggers. Yesterday morning I took Sam into the Ladies restroom at Church and within a second realised that I usually only take him into the Disabled bathroom with which he is now familiar. Any unfamiliar environment remotely "clinical" has always been puke-worthy, even before the holidays, so only twenty minutes into the service we were leaving with a stripped little smurf and an armful of eau de puke clothes. #sigh 

 

Having our last PT session for the year last Friday, Heidi and I discussed Sam's rather dysfunctional balance and possible ways to help him adopt at least a vague sense of being able to keep his little body upright. For instance, Sam cannot keep his body upright when going down a slide...he instantly falls backwards. Even in the swimming pool, he just sort of topples over. Sam's been doing really well on working with the PT ball again which is pretty awesome and I chatted to Heidi about possibly trying him on one of those little push motorbikes, particularly because he seems quite fascinated with motorbikes and fire engines at the moment.  Fire engines are definitely his favourite, always accompanied by the most adorable signing of fire engine but while I would love to buy him a fire engine of his very own that he can ride on/in, we've gone with the toy motorbike. I think it'll be one of the first gifts he'll be really excited about...which of course makes mom excited too :)



Words and Steps

Having just finished supper one evening last week, chinwagging about this and that, Brampies wondered out loud what Sam would be like if he did not have RTS or SPD.

 

I said that I think he would be very intelligent, quite cheeky, have an excellent sense of humour, be rather mischievous, extremely demanding and strong-willed but loving and affectionate too, you know, kinda like he is now....just with words and steps :)

 

At the moment though, words and steps are not flowing in abundance. It's been more than 6 weeks since that solitary word and not a single one more. Sam had quite a major fall with his walker, which I thought would put that one to rest for a while too but, both strangely and thankfully enough, he was quite happy to use the walker again the very next day. Sam was doing quite well with walking while holding one of our hands and then seemed to become quite fearful again. We still try at least once a day to give it a go...sometimes it works, sometimes it doesn't. This evening I was in the bathroom, getting Sam's bath ready and out of the corner of my eye I saw a little person...just a single, little person...walking round the corner. Honestly, my heart simply stopped...I couldn't move, couldn't blink...for a millisecond, until I realised that the single, little person's hand was actually attached to his, only then visible, Dad's hand. Disappointed much.

 

We are two weeks into our six week school holidays here, with the 2013 school year having ended on the 4th December.  There have been plenty of award ceremonies, concerts, recitals and all the other year-end happenings...most of which Sam did not tolerate all that well.  He lasted all of about two minutes into Meg's ballet recital before Dad had to head home with him, screaming and pulling hair like...uuhhmm, a kid with SPD actuallly. At least I got to stay till the end #Yay 



 

A recent addition to Sam's list of "hostile"sounds is water. The sound of the waves at the beach now freak him out, the sound of a sprinkler going, the water hitting the ground when Brampies or Dad waters the lawn. No less alarming, was the sound of the garden house filling our little pool for Summer.  So much so that Sam had a mini-anxiety attack every time we needed to walk past the pool (now full) over the next few days. Until we managed to coax him in of course. Then every time he saw the pool he asked, with his most charming sign language, to swim. Even on the way to OT one not-so-sunny morning at 9am.  And of course the moment he spots Meghan taking a dip, he requests so desperately to join her that there often isn't even time to grab his swimming trunks. Meg, being the awesome big sister that she is, has been very accommodating so far...

 

 

 And then there's this...

 

The little smurfy dude has taken to watching his Mr Tumble dvd's like this. Any time spent off his knees is welcomed, nevermind how darn cute he looks. He hasn't quite tried to "sail" along the furniture yet, but just having him feel comfortable enough to stand up again is quite huge. Baby steps, right? 

Change the plan but never the goal



Cannot believe it's the last day of November. And I've only blogged once this whole month, so had to attempt at least one more post, albeit short.  This time of the year is notoriusly "crazy" as the school year comes to an end and brings with it all kinds of activities like concerts and prizegivings, etc amongst having to study and write exams, Meghan that is.  We've only three school days left for 2013 and I can safely say that the entire household, Sam included, is looking forward to a little "chill" time.  

 

Sam's behaviour is all over the place...we have surprisingly harmonius days, like Friday, when the little dude was the most charming smurf around.  All smiles and co-operation during his physio session and sweet and friendly during a shopping trip immediately after physio, which is normally taboo with a capital YIKES! Followed by a day of up-and-downing in the car getting Meg to her different commitments.  Today he has been completely unruly, throwing anything and everything he can get his hands on, causing mutiny during Meg's ballet prizegiving and just generally being grouchy.  I am hoping that once our routine settles down again we'll see a little balance restored.  Even when life is a little more peaceful Sam tends to act up on weekends when, inevitably, his daily routine is disrupted. 

 

We have had quite significant improvement with Sam's walking.  I ditched the towelling wedgey I'd fashioned on Sam's walker as, although it was providing the security he needed when using the walker, it definitely made his walking a little awkward.  So, with Plan A proving unsuccessful, I fashioned Plan B...an old, stretchy belt attached to the walker which provides just enough security around Sam's trunk without hindering his movement. And, even more exciting, is that Sam has started pulling himself up on things again.

 

 

Success! Now Sam's more than happy to spend more time in his walker  #phew   

Heck yeah!

 

 

With Sam's testing all kinds of boundaries over the last few weeks I decided it was time to bring in some serious reinforcement when disciplining him and introduced a naughty chair. His first few sits were really quite traumatic for Sam, with his having sensory challenges with transitioning to and from a sitting position, but by the second day his being placed on the naughty chair was an opportunity for him to discover just how quickly he could "cute" himself out of punishment.   

 

 

On Thursday Sam had his very first haircut at an actual hairdresser.  The hair salon I had made the appointment with is super cute, decorated in true kiddies style with individual tv's and dvd players at each cutting station.  As soon as we walked in though Sam started gagging purely from having to encounter a completely unfamiliar environment. Of course getting him to sit on the chair was not an option but the stylist cutting his hair was refreshingly patient with him and pulled up a seat we could both sit on, which is where she eventually succeeded in taking a few worthwhile snips. 

 

The result (try as I might, I could not get this pic to rotate )... 

 

 

 

There's been not a single other "Mamma" uttered at all :(  But we persevere with getting Sam to repeat our very many requests to do so....or any other words for that matter.  But oh my gosh, the kid's signing vocabulary grows by the day as he astounds us often with signs he has learnt himself from watching Mr Tumble or his iPad.  His developed a bit of a defensiveness to water again, which is quite disappointing as Sam's evening bathtime has always been one of our favourite daily activities. Now, within minutes, he's throwing his bath toys on the floor and splashing around in frustration like a looney. I'm hoping this too will settle down soon, as I would often hang over the side of the tub, my face bare inches away from Sam's, and prompt some of our most intense speech therapy sessions.

 

So, with Christmas being just 25 days away, I guess it's time Smurfville considers putting up some Christmas decorations and an actual tree. I have to admit I am ever so slightly apprehensive about the entertainment value said tree and decorations are going to provide for Sam...watch this space!

 

Remember remember the 5th of November,

A day which brought joy equal to no other!

Sam has a book. Scrap that. Sam and I have a book, well several of them by now. He has this really interesting need for me to draw things relevant to whatever we might be doing/watching.  For instance, if we're watching Mr Tumble I will have to draw the spotty bag, Mr Tumble's house and occasionally even Mr Tumble himself.  If we're counting, I'll have to draw numbers. If we're sitting at the kitchen counter I'll have to draw the things he can see...the chairs, kettle, etc.  To be fair, most of the drawings are fairly hideous due to the rather challenging pace at which they need to be drawn, but certainly do reflect Sam's obviously vivid imagination as often I see absolutely no resemblance to the object of focus in my drawing, yet Sam will gesture excitedly in confirmation. 

Recently Sam has taken a liking to the biggest, most amateurish (and, needless to say, most embarrasing) of these books accompanying us out in public and I dare not leave home without it.  Driving while he pages through the book for the millionth time can be quite challenging as he expects me to acknowledge each page when he taps it enthusiastically.  On Tuesday on the way to fetch Meg from school was such a moment and while I try to (sometimes) fake a quick glance and guess what he might be looking at, in an attempt not to pancakerise the newly hatched goslings wandering around the local pond, I failed to even fake-glance.  After hearing him tap the page exaggeratedly, a small smurfy voice suddenly beckoned. "Mamma"

Any overshow of excitement with Sam usually ends in him crying so it took every ounce of self-control I could muster (and trust me, I am far from abundant in self-control with these things) to calmly stop the car, turn around and say "Clever Sam", acknowledge the drawing of Tinky Winky's bag he'd been trying to show me and then continue driving on to the school focusing through tear-filled eyes.  Once we got to Meg's school I straight away tried to get Sam to repeat it, but all he could manage was his usual "Vavava", with which he seemed just as pleased...
 

  

We've yet to hear another "Mamma" but believe me when I share that I attempt, several hundred times each day, to help Sam's brain find the path back to that wonderful place.

 

Sometimes the depth of Sam's sensory dysfunction completely blows my mind.  It took almost a whole year before Sam mustered up the courage to crawl down the really very short passage in this house, into our bedroom where he would sit in front of the mirror playing his drums or doing silent renditions of Heads, Shoulders, Knees and Toes (given away only by his actions), but suddenly about three weeks ago he became too fearful of entering our room again. The other day I decided to remove the curtains we'd hung over the blinds as they seemed to make the room too dark.  Within minutes Sam crawled into the room to admire himself in the mirror.  I did a quick calculation and realised he'd stopped coming into the room when we'd hung the curtains. No wonder moving house knocked the kid sideways...and a little to the rear too :)

 

Ah, sleeping wars...an ongoing battle indeed.  There was no substantial negative on nights four and five of the Clonodine, just that it doesn't work every night. Wednesday was a good night, Sam fell asleep within 20 minutes and only started bodybashing round 5am. Last night took the all too familiar two hours of bodybashing and a violent nosebleed before he eventually fell asleep, only to start thrashing again round 2am.  Makes me wonder if the Clonodine is contributing at all. Sam's system seems to have the most warped habit of doing well on a new med for the first four/five days and then somehow Smurfanity prevails and blows the new med out the water...or blood. So we've done Epsom Salt baths, Rescue Remedy, Valerian Root drops, Melatonin, Neurontin and now Clonidine. Honestly, could there be anything else to try? Perhaps I need to try all of these things together? On me!! Heck, there's a thought...with any luck I wouldn't even be aware of any smurfy bashing going on.  Hehe! Just kidding.

 

Rolled himself to sleep in a pillow pancake ;)

 

We're still trying to limit Sam's kneewalking but it becomes more and more difficult with each day as he grows increasingly frustrated, not only at having his mobility and independence curbed but also because most of his self-stimming is done on his knees. After Tuesday's little moment, I wondered to myself which of the two would be the most beneficial to Sam, if we could somehow guarantee that he would at least master one of the two, walking or speech...I think we'd definitely opt for speech, but still remain hopeful for both xxx



Tumblemania, Relocations....and poop

So at our paed appointment last Thursday we discovered that Sam's sole surviving little testicle has, in fact, checked out of Motel Scrotum and travelled up North :( Doc Paed does not seem all that concerned about it, hopefully it'll come back "home" on it's own...

 

Two things Doc Paed did seem concerned about were Sam's knees and Sam's rather very full-of-poop gut. Little pus-filled pimples have formed on Sam's knees from all of his knee-walking and with his completely refusing to use his walker lately, Sam is spending more and more time walking on his knees which causes the little pimples to break into little sores.  Doc Paed advised that the little open sores could become infected and the infection could then travel into Sam's joints. I tried sewing felt-filled patches onto his pants but a) the patches move too much as he crawls and flaps when self-stimming and b) it looks like its the actual friction between his skin and the fabric (regardless of how thick the fabric is) which is causing the problem.  So next solution...keeping Sam off his knees.  The first couple of days went relatively okay but Sam has become really frustrated at not being able to "walk"around as he's used to.  Also, for physiotherapy reasons and his forever tightening muscles and tendons, limiting his mobility is not the ideal solution.

 

So I decided to try modify Sam's walker, hoping that he would once again feel safe enough to spend some time in it...

 

 

 

...and it seems to have done the trick, to a degree. Despite Sam looking like he has one epic wedgey, the bit of cloth he can feel around him definitely makes him feel alot more secure and he's spent a fair amount of time in the walker over the past few days. Yesterday he and I even played a little walker soccer! From a physiotherapy point of view, providing Sam with a "crutch" is perhaps not the most suitable way of getting him to walk. But from a SPD point of view, sadly, as we get closer and closer to Sam's 5th birthday and with no really fabulous improvements with most of his anxieties and fears I think we're moving further and further away from Sam walking independantly one day.  So if having a little bit of security in his walker helps, so be it.  I'll give the fabric a rethink to find something more durable but without being uncomfortable. 

 

As for the poop - when Doc Paed examined Sam on Thursday, Sam instantly flinched when he touched Sam's tummy. An x-ray revealed that Sam's gut was absolutely filled to the...uuhhmm, brim (?)...with poop. So we've more than doubled his Movicol intake and used suppositories for two days, which is about as many as we'll get to use as that little butt instantly clinches shut now. Sam seemed to be doing quite well with more solid foods lately, but obviously his digestive system needs to catch up with his sensory self....so we're back to very pureed foods. 

 

A long while ago Doc Paed prescribed a med called Neurontin for Sam, to help with his increasingly-forceful body bashing at night. I was a little sceptical about the Neurontin as when googling it, I read that it was initially intended to treat epilipsy.  But as Sam's body bashing became more distressful and his left hip started "clicking" again, which it hasn't done for some time I decided to give the Neurontin a try. 

 

Oh my hat!

 

The kid didn't move....I didn't sleep! I lay awake making sure he was breathing, occasionally turning him so that his body didn't cramp. #eyeroll  But on the 3rd morning, Sam woke up with the mother of all moods and Morning 4 only got worse.  Mentioned this to Doc Paed who quickly came up with an alternative...Clonidine. 

 

Oh my hat!

 

While the Neurontin helped Sam stay asleep and free from body bashing throughout the night, it didn't help him fall asleep and this is when Sam does his most damaging body bashing. It has been taking Sam as long as two to two-and-a-half hours to fall asleep sometimes.  We started the Clonidine on Monday evening and Sam has fallen asleep within 20 minutes every night so far.  Night 4 is usually the defining night, so let's see what happens tonight. 

 

Random Smurfy News : About a month ago, a friend gave Sam three *Mr Tumble : Something Special* dvd's.  Have you seen these? I can't say I found Justin Fletcher particularly entertaining in Jollywobbles and Justin's House...perhaps because I am just a teeny bit over the age group of the targeted audience? But in these particular movies, Justin works together with some pretty adorable children with special needs to create a fun way of learning, using Makaton throughout the movies. Sam is besotted.  He watches absolutely nothing else...no Teletubbies, no Barney, no Tweenies...just Mr Tumble, for which he has formulated his own "sign' and has picked up many of the proper Makaton signs.  I'm almost a little disappointed that I hadn't started Sam with Makaton right from the beginning as he seems to be grasping these signs far more easily.

 

 

 



 Random Smurfy pic :

We're off on a hunting expedition...

...now why does that sound so familiar?

This particular hunting expedition takes place at Sam's paed's office and, very hopefully, will bless us with an awesome treasure...which treasure would be in the way of some sort of explanation as to why our little smurfy dude is still travelling along that road called regression. I do so hate that road...bleh :(

We're still stuck in that place where walking with the walker is an absolute no-no, even walking with me holding him involves loads of frights and surprisingly-potent pinches on whichever part of my body happens to be within reach (usually that tender spot at the back of the arm), bath time has again become a series of suddenly crouching forward in fear of the awful...uuhhmmm...nothingness behind Sam in the bath (!). Super clingy is a major understatement as Sam brings new meaning to the term "separation anxiety" which means lucky me (whoop whoop) gets to be in bed before 8pm EVERY. NIGHT. We're doing some great v-wording again too, mostly at night.

Usually this type of regression tails on the back of some sort of pain, usually from a surgery. But we've not had a serious surgery since the last testicle repair.  Which is my real concern at the moment...Sam's last remaining little testicle has gone M.I.A. I am hoping that perhaps it has just been in hibernation during the Winter and has not yet realised that (finally) Spring has sprung.  I have tried quite a few times to...uuhhmm...locate it, but can't feel it anywhere.  I am hoping that Doc Paed will perform a more confident examination and find it hiding away in a little corner somewhere because, honestly, another surgical repair for this particular issue will just not be a ball of fun :D

A quick glimpse into the last few weeks via some pics...

Sam had a pretty mean throat infection during the school holidays which inevitably landed up in some croup, which inevitably landed up in some v-wording

 

Not even going to delve into the disaster that is sleep (or lack thereof) but apparently pretending to be asleep is quite comical to Sam

 

Sick little Smurf

 

Venturing onto (and apparently quite liking) the big boy swing at Aunty Christa's

 

Embracing his paternal instincts

 

 

The warmer weather meant being able to get outside a little more, although the nasty South-Easter is trying bitterly to keep us inside. Boo!

 

How we spend bathtime.

 

iPadding in the dark when I'm meant to be sleeping. Tsk Tsk.

Syncing Sinking

Sam was less than 24hrs old when he was diagnosed with RTS and round 18mnths when he was diagnosed with SPD, following some really peculiar behaviour like screaming with (what seemed like) pain when sunlight touched his skin, gagging if his milk was too warm or, more problematic, not warm enough or even if a drop of it happened to fall on his tongue before he started sucking and many other bewildering little oddities. I accepted the SPD theory but can't say I put nearly as much effort into researching it as I did with the RTS, mainly because it seemed pretty self-explanatory and I knew that at least some sensory issues were shared by a number of Sam's RTS peers...and don't many of us have one or two sensory issues of our own anyway. At twelve years old, Meghan still wears all of her socks inside out because she cannot bare the feel of the ribbing against her skin, washes her hands, opens the bathroom door and then flushes the toilet last before running out so she doesn't have to be in the same room and can't handle tight clothing on her arms.

In hindsight, I should have afforded the SPD the research and knowledge it required. I can't help but wonder if I'd taken the time then, I might not have made more informed decisions about how I care for Sam.  For a long time I have presumed that almost all Sam's challenges are purely RTS related so started feeling a little puzzled as I watched several of Sam's younger RTS peers recently mastering many wonderful milestones.  Not comparison....merely observation.  We were still reeling in the celebration of Sam's walking progress, the blog post barely published before it all came to a sudden halt.  Not only does Sam now avoid his walker like the plague, but he is back to his normal petrified self...he won't even stand propped up against my legs without arching his back and throwing his arms up in fear.  One morning this past weekend we watched Sam, first with amusement, trying several times to manipulate his bottle into his mouth. The amusement was quickly replaced with something less pleasant as it took Sam, at the very least, 10 attempts to successfully bring the bottle to his mouth. His struggle to co-ordinate his arms, hands and mouth was really obvious and quite strange because he seems to more easily grasp the finer motor tasks like building puzzles or gripping a pencil. Anyway, this time there's no blog-induced, light bulb moment. No suddenly remembered bathroom pirouettes which ended in a bloody lip and traumatised regression, no painful surgeries being performed on my watch, no ironingboard-like drops to the floor...heck, I've been watching the kid like a hawk (well as hawk-like as your eyes can be at almost 40) and nothing sensational has happened to cause this current regression. So I joined an SPD Group (or two or five) on Facebook, which has been hugely therapeutic...corresponding with other parents who completely "get" your child's behaviour and associate it with the sensory challenges the kids face, as opposed to presuming that spoilt behaviour and manipulation is mostly the problem, is huge....HUGE!

I finally went out and bought a copy of Carol Stock Kranowitz's "The Out of Sync Child"' in the hope that I can try and sync this sinking regression...although the book has now found its way to the pile of dvd's, web links, documentaries etcetera etcetera I've been trying to work through for some time now. It defintely needs to stay at the top of my To Do list...uhhm, or somewhere close to the top at least.

A while ago, before Sam's walking progress, Sam's OT mentioned the possibility of a wheelchair to me, for Sam. It's largely the motivation behind me suddenly pushing Sam on the walking issue (mmm...could this be THAT lightbulb moment...too much pushing? Nope, me thinks not). The thought was a little saddening, especially because Sam's orthopaed doesn't feel any of Sam's physical issues should prevent him from walking.  But nevertheless, after some dodgy incidents with me trying to get Sam into and out of trolley seats while on my own, we spotted a wheelchair which looked like it would suit Sam quite nicely...and went ahead and bought it. There might have been a tear or two shed on the way to the car but then it was time to just suck it up, accept that it's not the snuffing out of hope but merely an adjustment of what to hope for. By now we've used the wheelchair many times and it works so much better than a trolley or pram. Sam sits higher so there's no fear involved when walking through a shopping centre with loads of people whooshing passed him and it handles really well with just one hand.  

In the iFix store - getting the iPad's screen repaired yet again, 2nd time in 8 months.

Ouch! Lots of dazzling lights though.

 

 

And some random pics to catch up with the more trivial smurfy news :





Apparently colouring is really hard work and requires regular naps throughout

 

 

I saw this really cool swing idea on the SPD page, so gave it a bash...and?

Apparently Sam feels quite comfortable in his little cocoon :)

 

We celebrated Mia's 1st birthday

 

And, yip, the kid still luvs his swinging.

 

 

Full Circle

As Sam's sensory fears became more and more challenging over the past two years, it was not just his sitting and basic daily mobility movements that required some creative tactics but so too did his physio sessions. When once Heidi had no problems stretching Sam on the wedge on the mat, this became an impossible task.  Up until a few weeks ago, if you laid Sam on the floor, or on anything too close to the floor, he became so terrified that he would just not move...not a muscle...not a finger...including his lungs. He simply would not breathe. His arms would be thrown out in his still-very-present "startle reflex"and he would lie there frozen until you picked him up. Now while the startle reflex still rears its head quite often (which has left both Heidi and I teary eyed after its resulted in a frightened little hand connecting accidentally with our noses) it's definitely toned down quite nicely.  And so too has Sam's anxiety about lying on the floor. I think I might have blogged about this already, but a couple of weeks ago I had no alternative but to lie Sam down on the floor to change his nappy at a friend's house....Sam was so scared that I had to keep rubbing his tummy while changing him to get him to take a breath.  I decided that we honestly just can't go on like that and so every day since then changed his nappy on the floor at home. At first Sam will still get a bit of a fright but within seconds now relaxes and let's you carry on, so 3 physio sessions ago I suggested Heidi try stretching him on the wedge again and not once since then has she had to resort again to placing him on one of the adult physio tables (which for some reason, even though narrow and quite high up, was less frightening for Sam) to do his stretching.  It might seem like a small victory, but it's actually a pretty huge one for us.  Sam's sensory problems have pretty much controlled much of our lives over the past couple of years so to see at least some of them improving brings refreshed hope.  We've not yet reached the point where I can use the vacuum around Sam and I still have to walk around in the middle of Winter with wet hair as hairdryers are most definitely still on the v-word list but it's really not too important right now.  Yesterday while playing with Antoni, Sam did not feel me moving away from him while he sat on the floor (which usually causes that "plank reaction" as soon as he feels I am no longer supporting him) and sat for a good 15 minutes before he got onto his knees and crawled away as if it is something he's never had an issue with. 

 

This picture is from about two-and-a-half years ago just before Sam had his first attempted testicle repair, which was when his sensory challenges took a major dive.

 



Today...not in the least bit worried about lying on the wedge and not only breathing but doing some pretty awesome happy-flapping too.

 

 

It has been a really loooonnnggg two years :) Watching Sam lose milestones which had taken him so long to achieve, like sitting and pulling himself up into a standing position, etc, really took the wind out of my sails. How could we move forward before we found ourselves back at that point? Well finally, two years later, we are here now...and it feels pretty darn good...and really very exciting.  I cannot wait for the weather to clear up so we can get out there! I don't really know where "there" is but with Sam being able to walk short distances while holding my hand it could be feeding the ducks at the dam, standing watching the kids on the playgym at our local shopping centre, taking a slow walk to the gate at Meg's school :) This morning Sam sat on one of the physio blocks while I put his shoes back on after his session.  When finished I held out my hand, he took it and pulled himself up and we walked to the door. It was such a natural process, something so many folks take for granted. When next you happen to be walking alongside your little one, take their hand and for just a few moments walk WITH them...it is a joy, a heart's desire, too many parents will never have the opportunity to experience.  I am thankful for feeling that joy today xxx

 

 

Techno Smurf takes a fall

So the inevitable happened...Sam took a tumble from his walker.  It might sound terrible, but it was sort of kinda funny...I guess if it had been a more serious tumble I wouldn't be saying that.  He's gotten so confident with the walker that if he gets himself stuck in a corner or something, he simply pulls and lifts the walker up until he's free...but pulled a little too hard this time and overbalanced. The funny part was that it was in the most comical slow motion. Usually, when about to fall, Sam makes like a plank, often resulting in his head been the first part to hit the ground. This time, he fell (really quite softly) onto his bottom...sat there for a second or two and then ever so slowly toppled backwards. Thankfully the only thing thing hurt was his feelings at me trying to stifle a giggle while comforting him.  I did worry that with his tendency to avoid actions which have caused him "trauma" he might be reluctant to stand up with his walker again but just minutes later he was waddling around as if nothing had happened.  Phew! 

 

Apart from his newly acquired walking skills, Sam is fast acquiring a new skill....surfing...the net.  A couple of weeks ago, while trying to post Sam came crawling over and asked to be picked up. When it became obvious that him sitting content on my lap while I typed (Really?) was not going to work out, I went onto Youtube and let him watch some kiddies video's (where we discovered the Mother Goose Club - which Sam is now heavily addicted to). What was I thinking? Now the second I come sit in front of the computer, he's trying to get up on my lap, pointing at the screen and signing which video's he wants to watch. Yes, we actually downloaded his favourites onto his iPad but apparently they have a completely different appeal when watched on mom's lap in front of the computer. Another favourite activity is checking out Facebook and watching what his RTS sibling across the globe are getting up to, particularly this last week with it being back to school for our overseas RTS family...which meant even more photo's. 

 

Mother Nature has evidently been spending too much time social networking too as she's been a bit slow on the nearing Spring transition.  So, still having really lousy not-much-good-for-outside-activities weather, it was an absolute blessing to have some wonderful sunshine this last Sunday made even better by an impromptu visit to Haven of Hope...

 



 

Sam's friend Antoni with his mommy, Marili

Sam and Aunty Cheryl, enjoying a cuddle after not seeing each other for so long

Here's longing for some more of the same xxx