Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
Our world has crashed, been blown apart.
This can't be happening....why us? Why now?
Your fragile life shaken before it could barely start,
How do we get through this...please, Lord, tell us how?

Drowning in our sorrow, waiting for answers that just don't come.
Our baby "special needs"? It simply can't be true!
The heartache overwhelms us, we're left feeling cold and numb.
The diagnosis tells us little - these children are so few.

But then we finallyget to touch you, to see your precious face
And all the heartache and questions fade, replaced with love and pride.
It's obvious from the very start you're showered in God's grace,
And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.
When once the future seemed dark, we now welcome the journey as having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!
This IS us.....right now!
We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....
By believing in a God, so merciful and great,
By trusting that He's right beside us as we journey through the narrow gate.
By believing His love for us is not determined by a human frame,
By trusting that we draw Him near by merely calling His name. This precious baby we asked God for,
Prayed he'd be perfect and complete.
And, as Samuel means "God hears", He's laid His answer at our feet.

(Nicky de Beer : 27/05/2010)

Monday, December 23, 2013

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 :)

Thursday, December 19, 2013

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? 

Saturday, November 30, 2013

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 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 this space!

Thursday, November 7, 2013

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 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

Thursday, October 31, 2013

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 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 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 :

Thursday, October 24, 2013

We're off on a hunting expedition... 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.

Wednesday, September 25, 2013

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.

Friday, August 30, 2013

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 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

Thursday, August 29, 2013

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

Wednesday, August 21, 2013

The Good, The Bad and the Ugly

Let's start with THE UGLY   and work our way back :)

This is a letter received by the grandmother of 13 year old Max Begley, a child with severe Autism, in Newcastle, Ontario, Canada. The letter is self-explanatory and has pretty much gone viral on the net, been covered in the news and probably been read by a decent number of parents to children with disabilities.  I can go on and on...and on...about how despicable the letter is and what an appalling character this woman has. But, although I am sure she is one of few who had the audacity to actually vent her feelings about how she views people with disabilities, I am just as sure that she is not alone in simply having had these thoughts. The news report showed short clips of a lovely-looking young boy, excitedly bouncing his ball around and jumping up-and-down with all the attention and support the community is offering the family and I thought "Heck woman! Imagine what you'd say about Sam in 9 years time!"
So instead of going on and on...pffft...can I just ask whoever might be reading this post who does not happen to be the parent of  a special needs child, just please DON'T be this woman. Don't disregard a disabled person's life as a waste of body parts, don't ignore that they have feelings just like you and your children do, don't instantly condemn their behaviour just because it is something you have no knowledge or understanding of, don't frown upon their parents as being lacking in the way of discipline and guidance when you see a disabled child struggling to cope with his/her social environment, don't fail to bless a disabled person with your smile just because you think it might go unnoticed or, worse, not be worth the trouble....don't not respect them...don't not accept them...don't not love them...Yip, that's about it.
The bad is actually kind of relevant considering the above. Sam has developed this new sort of grunt-type sound and his love of his newly acquired sound is growing as quickly as what his dislike for attention is and his, seemingly, growing frustration with not always being able to communicate properly.  It's two of Sam's most challenging Sammerisms at the moment....if he does something cute or clever he'll point at me to show his dad or Brampies or whoever...but then when the person looks, he gets so upset and protests with this loud type of grunt.  Also, when he's refusing to do something like lie down for a nappy change, he uses this same sound.....going completely bright red from the neck up and causing his little RTS moodlet on his forehead to almost glow. Honestly, this may sound crazy, but it sort of looks as if Sam's trying desperately to actually SAY something and becomes frustrated and angry when he can't verbalise his thoughts.  If we're in public and someone happens to look at him or, horror of horrors, talk to him he instantly gets agitated and a-grunting we will go.  It's almost a little sad to see it when you're not busy worrying that the poor little dude could burst a blood vessel at any moment.
If I choose to endulge myself in the thought that Grunty Smurf is in actual fact trying to get his brain and his tongue/mouth on the same page, I would have to brag that it's not the only bit of remarkable progress we've had over the passed week.  Sam's absolutely atrocious "driving"of his walker has had me just a tad concerned and when I eventually had to resort to moving all the furniture safely (well kind of) up against the walls to avoid them being shredded by his bumper-car-manuevres, a fleeting thought of whether he would ever grasp the concept of walking lurked in the back of my mind.  At about the same time last week I decided to go full steam ahead with a gluten-free diet for Sam. It requires a little more effort and creativity where meals are concerned but it's definitely getting easier and Sam doesn't seem too concerned that gluten-free foods are definitely not as tasty as the good ol' unhealthy stuff. So, take a little fear (that he might not walk) add a little motivation (derived from the hope that I'm doing something useful with Sam's diet) and one gets a surprising amount of dogged determination. I decided last week that it was Sam and I...and his walker. And for two days every half hour or so I put him in front of the walker and made him stand up into it on his own and get down again on his own which were two of the biggest issues Sam struggled with when becoming more comfortable with the walker. On Thursday I was standing in the kitchen, the walker left in the passage and Sam happy-flapping in front of the tv.  Next moment Sam's head bobs out of view....and back in again, just a little higher this time...and around the corner he comes with his walker. Of course I went berserk with uncontrolled excitement which made him grunt at me in defense.  But how could I not....and now, almost a week later, it's still kind of surreal to see him calmly pull himself up and waddle away. His driving skills are not much less shocking than before but his sudden confidence is astounding.  As cruel as what it might seem, one day I really need to take some video's just to show the type of fears Sam deals with when having transition through "normal" day-to-day movements...sitting, lying down, etc.  But for now, you'll just have to take my word for it that this is all pretty huge. 
Sam is so confident about the whole thing now that sometimes he pulls himself up with his walker...walks like two steps...gets down on his knees...pulls himself back up, almost like he himself is having trouble believing that he was once so scared. And even though Sam's using the walk back-to-front it still building his confidence up even further, he now walks with me holding onto just one of my hands, he's started pulling himself up again in his cot and on furniture and even manages to manipulate himself around on his teeny weeny little chair so he can get off all on his own. He's exploring new parts of the house which previously he avoided, even though it's almost exactly a year since we moved here. Now I don't know if it's the gluten-free effect making his little brain streamline certain input more clearer or if it's me borderline harrassing the poor kid to the point of tears (mine, not Sam's) to get this or possibly a combination of both but it does feel so soooooooo good to see a little progress. No wait, to see a LOT of progress :)
We're even confident enough to play tenpin bowling in our walker 
And what we don't knockdown with the ball, we simply ride over
Going for a walk

Climbing off the chair

I know that these might seem like such trivial accomplishments but my-oh-my for a kid whose mobility sometimes causes him such fear that he forgets to breathe, it ain't so trivial at all xxx

Tuesday, July 23, 2013

The lifting of spirits... becoming quite the challenge with our little smurf. There are very rare moments of happiness and peace throughout Sam's day...occasionally none at all. For the most part Sam is anxious, agitated, distant and pretty darn hostile to most things. It is an incredibly sorrowful sentiment for a mom to share about her is even more sorrowful when we're battling to pinpoint the cause/s.
And so we resort to one of the few things which still bring a smile to Sam's enchanting little face...swinging.  And lots of it.

...we swing when the sun shines...


...mesmerised by our swinging shadow.
(Not as mesmerised though as Mom about where his slipper's got to).  

We swing when the sun doesn't shine too :)

And, as terribly exciting as what it is standing swinging a little smurf for up to an hour at a time (although not as exciting as the neighbours having to listen to my swinging adapted songs : The Sammy on the Swing goes up and down (Wheels on the Bus), Old Macdonald had a Swing, Hickory-Dickory-Dock, the mouse ran up the swing...the swing struck one, the mouse fell down...and so on and so on) every so now and again we have to actually go inside and attend to life.  But never fear,  Sam's baby swing is near...

Swinging with Barney and Baby Bop

Ooooh! So that's where it went.

At best I'd have to say we're stagnating a little with Sam's progress but the truth is there's been slight regression with some things.  While Sam's still taking some "normal" food, we're back to a fair amount of pureed food.  Sam's heightened sensory defensiveness is the most troubling issue right now.  He is, once again, absolutely petrified of the "small things" he was doing okay with just a few weeks ago like being able to...
...I was just about to type "being able to stand and cruise along the bath in the evenings". 
Where on earth is my mind? I keep saying it's almost as if something happened (eg. a fall) to make him frightened again because even just handling him in your arms is pretty challenging, if you lean him too far backwards or sidewards he freaks out and grabs whatever he can hold on to as if you're about to toss him over the side of a 30-storey building.
And I just remembered that a few weeks ago, while standing watching me ready his bath he suddenly released both hands and took a nasty tumble, landing up with a swollen and bloody lip. I think I even posted a pic on FB (I've come to the conclusion that FB is my blog's greatest enemy). Okay, so that's one mystery solved. Now to try figure out why he has become so much more flappy and stim-seeking, frustrated and angry and completely distressed with the slightest bit of social interaction.   
Because of the amount of body-bashing Sam does to fall asleep and, during the course of the night, to get himself back to deep sleep, we decided a couple of months ago to change Sam's cot-bed set into the little bed.  However, despite the awesome custom-made bedguard Dad made, Sam refused to sleep in the bed. So, trying desperately to revert back to the things which had previously seemed to work for Sam (he was quite happy throwing his little body violently against alternating sides of his cot, it was us who couldn't bare to watch it) Dad put the cot-part of the combo back together over the weekend. 

Sam's quite happy to sit and iPad in his cot, but he's not doing a whole lot of sleeping in it yet.  Patience.

Sam's sign for "cry".  He keeps instructing everyone to cry. 

Random : Taking the Tubbies for a stroll and, even though it leaves little place for his hands, he insists on all four of them coming along :)
We're starting a new adventure tomorrow...I really have my heart set on it being a blessed adventure for everyone concerned so here's hoping...xox