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)

Thursday, September 1, 2016

Are We There Yet?

Okay....are we okay yet?
The first five years are the most challenging...after that, everything seems to settle and you'll be of the most regularly-shared reassurances we were offered during those first years.  Gosh...Year 5 became my desperately sought-after utopia, if only we could make it to that benchmark, then we'd be OKAY!
Except...we didn't get okay! Instead we got Belgium and Belgium was pretty sucky as it came in the form of an additional diagnosis, Cerebral Palsy. That is just so not how it was supposed to go.  Initial diagnosis at birth - Rubinstein-Taybi Syndrome. Great, got speaking, feeding issues, ineducable...blah blah blah. Or so according to Sam's (then) paediatrician.  So, shatter all dreams for your littlie and try and just get through each day at a time...and literally at that stage because the little dude wasn't quite sure he wanted to do this whole ventilation-less breathing thing or leave his entertaining game of musical incubators in the NICU so for the first few weeks, each time entering the NICU was accompanied by crushing waves of nausea and fear about whether Sam had managed to make it through the night without slipping back to High Care.  But then we linked up with other parents of RTS kiddos...parents who were a more accurate and encouraging source of information and support than any medical journal and/or individual divulging said information...and we discovered okay, where children with RTS DID in fact thrive and learn and communicate (perhaps not verbally) and went to school and were so very educable.  So...kept the eyes focused on that five year mark and bulldozed ahead through therapies and surgeries and doctors' appointments and regressions and illness and and and...because at the end of all those draining challenges was our okay.  Except, literally days before our five year mark, our okay got ever-so-slightly crushed with the results of an MRI which explained why Sam was not yet quite achieving milestones other RTS peers had by his age. 
I think I kind of gave up on okay.  I certainly was not going to go setting new benchmarks because the tricky combination of Sam's diagnoses (Yeah, we got to officially throw Autism in there as well) meant we no longer had a clear guide as to what to expect when, with no similarly effected children to draw measure from.  So, benchmarks are just not our thing it seems.  I felt kind of lost.  Actually, I felt very lost.  There was no longer a plan with a somewhat defined goal.  We were goal-less.  Goal-less is not great I tell you, it can suck the motivation and spirit to keep going right out of you.  So we threw goals out the window and just went with whatever was working for Sam at that moment.  And, at that stage, it was one-on-one tutoring with as little social interaction or change of routine as possible.  And that worked really well, for a while. 
But by mid-way through last year things changed.  With no experience in teaching and/or educational guidance whatsoever, I ran out of stimulating things to challenge Sam with...and he became extremely bored with the work I was doing with him.  Aggravating the situation more was the disruption of our every day routine after I joined the Danniel and Friends Fund and while I was revelling in having something so exciting to throw myself into, Sam was doing just the opposite.  Still, there were no schools which I felt were adequately able to withdraw the immense potential lurking beneath the lil flappy dude's packaging and so homeschooling it stayed. 
And then 2016 happened :
Where Sam finally overcame his fear of sitting on unfamiliar objects
and ventured onto a (for all intents and purposes) "Mickey Mouse"
one Sunday morning...granted after much coaxing from Dad.

And the newfound courage to try new things lingered a little longer.
And we added a member to our family - Chipolata aka "Chippy"
who first caused incredible disruption in our home as Sam battled
with the idea of having his place of comfort so vigorously invaded
by this not-so-welcome addition.  But before long, the two had bonded
and now every day upon arriving home from school, Sam first spends
a few mins with Chippy (who, if he was human, would most definitely
be just as flappy a dude as Sam) offering his hand to Chippy for some
crazy-affectionate licking and nibbling.  
Um...did you spot it...THAT!
At the beginning of the year Sam and I started attending one-on-tutoring sessions at a newly opened school closeby, Edu-Play.  The sessions went extremely well. Sam completely soaked up what was being shared with him as the activities were being tailored specifically to Sam's style of learning and the patient, accepting and genuinely caring atmosphere of the facility made Sam feel comfortable and safe.  At the end of the second term, Sam's tutor, Carlyn, suggested finding a carer/facilitator for Sam and enrolling Sam in fulltime classes.  Neither my mind nor my heart could work my way around the idea.  I'd given up on the idea that Sam would ever do something as "normal" as go to school, especially here in South Africa where not only are schools for differently-abled children limited, but schools which can cater for as unique a combination of diagnoses as Sam's are very nearly non-existent. Even as I started the process of trying to find the right carer for Sam, I don't think I ever really considered it becoming a reality.  And it almost didn't.  Finding a carer for Sam proved more tricky than I'd anticipated and it was literally two school days before Sam was meant to start that Leeanne happened upon our little flappy dude. 
So, on the 18th July 2016 I drove Sam and Leeanne to school for the very first time.  To be able to indulge in an activity so normal and taken for granted by so many others, is without words.  Sam's unexpectedly comfortable transition into his new routine still has me a little surprised, but reassured that he is happy.  As Sam nears the end of his seventh week in school, the novelty of each trip to and from school remains.  Over the passed couple of weeks Sam has been trying desperately to communicate more, becoming extremely frustrated when I am not able to fathom the signs he has resigned to making up himself when I do not grasp what he is trying to say.  It is a frustrating process, but also an encouraging one which I am sure can be built on to try and shape a way forward for some form of effective communication medium for Sam.  Being the only child in the school who is not able to walk, Sam has also started taking one or two steps on his own, although he is still extremely fearful and cautious.  On several occasions now he has stood completely independently to be able to use both hands to sign to me.  There was a nasty fall that happened a few weeks ago with one such incident, but the anticipated regression which would usually come with such a fall was short-lived and seemingly quickly forgotten.  The extent of Sam's progress over the last month-and-a-half is something I would simply not have imagined and without a doubt I know that Sam is where he is supposed to be right now, tapping into yet-to-be-discovered potential.  It makes my mama heart burst with pride.  And as I read the daily reports about what Sam has done at school, look at pictures of his daily activities and still occasionally glance over Sam's very first Playball report, unpack his lunchbox and prep his schoolbag for the next day I sigh and dare for a moment to entertain the idea that I think we have finally made it to okay.  



Saturday, April 9, 2016

Shame, Superheroes and Acceptance

Wow! Just over two months since I last blogged! Hangs head in shame.
What's been happening here in Smurfville? I think I would need to be able to make some sort of sense of it all myself to be able to communicate it in a way that would in turn have it make sense to someone else. But I don't. So I can't.
Again, no major life-threatening matters clouding our skies nor anything which most would consider detrimental to one's quality of life, but yet they are issues which are just that...
Sam's eating issues are still erratic and perplexing, yet thankfully there has been some improvement this week.  For a long while he became so resistant to food that not only would he refuse eating it himself but would act out against anyone who was eating near him. This week, for the first time in months he asked for what used to be one of his favourite snacks - mini Marie biscuits. He did throw the bowl, contents and all, after two biscuits but it was a start. The next day Sam ate almost half of my toasted sarmie and seems to be back on track with eating again, which would've been great if we hadn't simply traded eating issues with drinking issues.
As those who know Sam personally are aware, he has a major sensory aversion to moving liquid of any kind...a water-hose running, water moving/splashing behind him in the bath and, always most entertaining, liquid in a bottle. Yes, at almost 7 years of age, Sam still drinks from a bottle...for two reasons :
Firstly, his oral defensiveness is so severe that trying to manoeuvre anything else besides his Avent teat passed his lips is a no-go. Also, he never closes his mouth around anything besides the it a straw, pump bottle, cup...whatever.
Secondly, Sam never had and still doesn't seem seem to have a natural swallow reflex, so even if you did manage to get him to close his mouth around a spout or whatever, he would more than likely choke on whatever liquid I'd managed to get into his mouth. Even after 6+ years on a bottle, he still sometimes chokes or somehow manages to get the milk up his nose, especially when I've tried to thin the Pediasure a little to try dilute some of those calories.
So warm Pediasure from a bottle has been his only form of hydration for many years. And still, Sam has never been 100% comfortable with even the bottle. A minimum of 5 bottles a day, every day, for the last almost-three years (because it took him 4 years to conquer enough sensory issues to simply touch the bottle) was met with the same process...the bottle would be handed to Sam (always at the precise temperature) and Sam would hold the bottle to his mouth and mentally prepare himself for having the liquid in his mouth. You think I'm exaggerating...being a little melodramatic perhaps? Close friends and family know the process well and have even joked good-naturedly that it looks as if Sam is first praying for his milk.
Despite there being some regression with the whole drinking thing, it has brought with it an unexpected benefit. While I can live with the refusal to eat, with Pediasure providing more than ample nutrition for it not to be anything more than a little disappointment at another step back, not drinking as well had me worried to the point of desperation. When pouring Pediasure into the lil dude's mouth from a cup/bottle lid resulted in such bad chokes that the milk would eventually spew from his nose, not to mention the amount of Pediasure which was being wasted as it poured from his never-closing mouth, it was time for some tough the way of a Winnie The Pooh squeeze bottle. Granted there is no contact between lil dude lips and the bottle, but squeezing the milk in sure is a whole lot less messy and after a nasty choke or two, Sam seems to accept the squeeze bottle as a means of drinking and even seems less fussy about the temperature of the milk so big YEAH for not having to carry flasks of boiling water and a jug everywhere with us.
As it turns out, Sam's teeth seem to have been the problem with the drinking issue. His adult teeth push through before the baby ones fall out so in two separate places there were two teeth in one socket and I could actually hear the teeth grinding against each other when he drank, causing (I'm sure) the most horrific sensory repulsion. Since the one tooth has now fallen out (and escaped into the Bermuda Triangle that be the lil dude's digestive system...pretty much like every other tooth he's lost naturally) and the second loose tooth is slanting at an odd angle, drinking over the last 24hrs has been almost back to normal except that Sam will not place the bottle in his mouth himself...almost as if he doesn't trust himself to do it without creating that awful grinding again.
A re-visited challenge we're finding probably the most difficult is travelling. Sam has always been terrified of being in a car, but was least anxious when in my car with the most challenging part having been getting him into the car. Often there were frantic handfuls of hair grasped...little nails tearing at arms and neck when the 2 second manoeuvre to settle him into his carseat would require an ever-so-slight backwards tilting. But once strapped in, he would settle down quickly and that was the end of the panic. Recently though, when we've needed to travel as a group to a meeting or the like, I've had to put his carseat into a friend's car...which of course would not only result in the most aggressive car transitioning but a lil dude so panicked that his white-knuckled hands would not let go of the arms of his carseat, back arched in super-defensive extension and breathing happening in short, shaky gasps...even though I was sitting next to him providing deep-pressure comfort across his torso. Obviously I did this once too often because gone is the comfort he found only in my car and instead each and every trip we've made over the last couple of weeks has been reacted to as if in a strange car. It's fairly exhausting and any effort in the way of tidy hairdo's is destroyed within seconds of trying to get Sam into my car, replaced instead with what leaves me looking like I've been involved in the most heated of cat fights, with random loops of hair gone astray from my once-tidy ponytail and scrawly scratches for extra affect. Of course there's an upside...I've often joked that even if I won the lottery and could afford the most extravagant of vehicles, my little red tjok-tjorrie would still have to make do...but hey, now that the comfort once associated with that little red tjok-tjorrie is gone, there could be no more perfect time for an extravagant vehicle. Now to see about that lottery ticket....LOL!
It's too easy to become frustrated, impatient and despondent when facing some of Sam's challenges.  But can you imagine spending 90% of your life captive to one fear or another? Simply trying to create an idea of what it might be like lends me the confidence to say that I would not have managed to overcome many of the issues Sam whether we're screeching like a loon in the middle of a shop,  nearly suffocating ourselves with the fear that goes with being in a car lately or diving face-first into a bath full of water because a ripple of water moved behind us...Sam remains my SUPERHERO!
April is Autism Awareness month and while Autism is just one of Sam's three diagnoses (together with Rubinstein-Taybi Syndrome and Cerebral Palsy-Periventricular Leukomalacia) it has, for some time, been the condition we struggle with the most as it is predominantly responsible for creating the challenges we battle when dealing with what should otherwise be simple day-to-day tasks...and so we are as passionate about raising awareness for Autism, as for the other two conditions.  Having said that, Sam's t-shirt sort of sums it up...

Sunday, February 7, 2016


Gone, thankfully, are the days of hauling out cryptic map books when searching for never-been-there-before locations. Nowadays we jam on our GPS of choice or, if you're like me, Google Map every place before the time, preferably with a streetview, so that you can memorise all surrounding street names (just in case) and even a "landmark" or two. While I've not yet needed to purchase a GPS of the conventional kind, I am privileged to be accompanied on each trip by a location-finder of sorts anyway. Fabulously impressed that my particular GPS is spared the usual mechanical, insufferably-monotoned verbal directions, opting instead for charming grunts, excited gestures and warning screeches when necessary, the only snag is the rather limited choice of destinations (exactly two in total) and just as limited routes thereto. The you're-heading-in-the-incorrect-direction alarm could also benefit from a volume button or, even better, simply a MUTE button, particularly when attempting to make which is nothing more than a 200 metre detour in order to take care of the concerning petrol light results in such extreme protesting that you look worriedly passed the light, take a breath and hope that there are sufficient fumes to carry you and said screeching GPS home.

This little dude...always an enigma with his odd Sammerisms. Almost as enigmatic is his exceptionally accurate knack for remembering the makes of cars and who drives what. Every car trip, even while ensuring we are travelling his preferred route, is spent scanning the roads and pointing out every make of car he recognises. Different colours don't confuse him, so its the model of the car Sam's actualling taking note of and then excitedly gesturing whether it's Daddy's car, Nina or Lisa's car, etc. With mind-boggling perception Sam will notice a car whisk briefly across the road, even from a surprising distance. It's really quite intriguing.

Unfortunately we received some not-so intriguing news on Monday regarding Sam's vision. With Juvenile Glaucoma being linked to Rubinstein-Taybi Syndrome, for the first few years of life Sam underwent six-monthly Glaucoma examinations under anaesthetic, as the Opthalmologist we were seeing felt that Sam tolerating the examination simply in his consulting rooms was highly unlikely. Luckily (?) as Sam was having surgeries almost every six months at that stage, finding theatre time to couple the examination with was never a problem as having Sam undergo anaesthetic simply for a 5 minute exam was also not ideal.  However, the only surgery Sam has had over the last two-and-a-half years was done with less than 24-hrs notice which was just not enough time to bring an Opthalmologist on board.

Concern growing with each passed examination-less month and Sam seeming to have lost interest in reading flashcards and books like he used to and even becoming a little agitated when I tried, I decided to make an appointment with a local Opthalmologist to discuss going ahead with the examination in theatre, even if it had to be a 'wasted' anaesthetic. When we arrived at the rooms, the receptionist asked what we were needing to be done and when I replied that I was wanting to make arrangements for the Glaucoma examination, she walked over with some eyedrops to dilate Sam's pupils. I laughed and told her not to worry as there was no way Sam was going to sit calmly through it. She suggested we try some drops just in case...and what a worthwhile suggestion it was. Sam did awesome through the examination, scan of the optic nerve and the tonometer. The great news is that there are no signs of glaucoma. The not-so-great news is that Sam is considerably visually impaired and should have been wearing specs years ago already to make the most of the limited time during which your eyesight develops. With vision teaching optimum development around 8/9 years of age, Sam's been robbed of some much-needed time. So specs have been fitted and once the apparently fairly thick lenses have been fitted, we'll dash down to collect so that not a second more is wasted.

Besides helping with his vision, Sam's physiotherapist is hopeful that being able to see better will increase Sam's potential to walk unassisted as he'll be able to more accurately judge the distance between himself and, for example, furniture.

A sneak preview...Sam quite happily tolerated the specs but there's quite a difference between keeping them on for 10 minutes compared to 10 hours.

Wednesday, January 6, 2016

Celebrations Re-visited

Six days into 2016 already! Wow! I so planned an end-of-year, this-is-where-we're-at post. Guess we're doing a beginning-of-new-year, this-is-where-we're-at post instead.

Festive-Season plans were kept on the subdued side this year as Sam was scheduled for a Tonsillectomy on the 15th and the ENT doc had told us to prepare for a pretty hellish two weeks of recovery. And what would Christmas be without a surgery/illness anyway, right? Christmas 2010 we did Spinal Cord surgery on the 20th December and since then some-or-other bug each and every year.

On the 14th December (having finally made peace that removing Sam's tonsils was the only way to go and keen to just get it over and done with) we had a consult with Doc ENT, who had last seen Sam in October, to a) run through the final details for the following day's surgery and b) check that Sam was good to go for theatre and, more importantly, anaesthesia. After an extremely thorough examination Doc ENT concluded that he could not be certain that Sam's tonsils were the cause of us not having had a decent night's sleep in the last six week. Yes, he reasoned, the tonsils are enlarged but not barely close to what is referred to as "kissing tonsils" which is when the tonsils are so large that they actually touch (can you imagine?). Sam's greatest breathing issues come from having an extremely deviated septum in the right nostril which is almost completely obstructed (so much so that when I spray Sam's nose he has to lie on his back to allow the little pool of liquid to slowly drip passed the septum) and the common RTS floppy airway. Doc ENT advised that there are usually only two reasons why tonsils should be removed...significant airway obstruction and repeated tonsillitis (more than twice in a twelve month period). Already confident that removing the tonsils was not going to make a worthy difference to Sam's quality of sleep (which was our main objective) and with Sam last having had tonsillitis about 4 years ago, he was not 100% comfortable with going ahead with the Tonsillectomy and presented it in a pretty convincing argument, saying that should there be any complications and he was to land up in a Court with questionable motivation for having performed the procedure, there would not be sufficient medical background to substantiate his decision. scrapped for now!

Doc ENT did refer me to a dietician as he feels we are not managing Sam's reflux as efficiently as possible and this is in fact what is causing the constant irritation in Sam's throat. He suggested trying to get Sam off pureed foods completely and as quickly as possible as the absence of chewing (which stimulates the production of digestive enzymes) aggravates reflux and also suggested a completely dairy-free diet. Yikes! A tall order for a kid with extreme sensory challenges whose diet consists purely of pureed meat and veg, cheese, yoghurt and the occasional mushy mac and cheese. Oh well...what were we to do but give it a go. Doc ENT feels that with an adequate lifestyle-change regarding Sam's eating habits, his reflux should be so efficiently managed that medication should no longer be necessary.

For 13 consecutive days (starting immediately on the 14th)  the Lil Smurfy Dude ate all things un-pureed...WHOOP! WHOOP! Chicken and even beef finely cut up and mixed with veggies and couscous was a HUGE thumbs-up. And then? He stopped as quickly as he'd started and we were back to pureed foods. Well, actually at this point, we're back to NO food as its been almost a week of him refusing to eat anything at all! Talk about from one extreme to the next...special needs parenting is most certainly just that...EXTREME!

Sam's adult front tooth (the baby one which he ground down into the gum which then had to be cut out in theatre) has been struggling to come through for some time now, you can see it sitting there in all its toothy glory just under the gum. It just can't seem to break through the gum, possibly because that section of gum was sutured up as opposed to having a "gap" where ordinarily the baby tooth would have fallen out. So that could quite possibly be the cause of his not wanting to eat. Sam does also have a bit of a crampy tummy-thing going on so perhaps even a bug in the brew...who knows? But even if it is a bug, the 6th of January is most definitely not considered "Christmas-time" still (just smile and nod, okay) so...YEAH!!! for our first illness/surgery-free Christmas in five years. Ah, as they say, celebrate the small things!

Aaaaand...another hidden blessing of special needs parenting...some time in the future we are going to get to celebrate Sam tolerating un-pureed food again (this was like the third time already LOL!) Just like we are going to get to celebrate him taking one or two unassisted steps again. What could be sweeter than living those precious moments more than once? And each time is as awesome as the first :)

Ooooooh...talking about celebrating...we have finally managed one other liquid other than warm Pediasure out of a bottle (right through the sweltering heat of Summer usually) and it be litchi juice out of a juice box! Fair enough Sam isn't so much sucking on the straw (or even closing his mouth on it) as what I am squeeezing the juice into his mouth, but's juice...out of something other than a counts ( and nod).

Happy New Year everyone...may it be a Blessed and prosperous one for us all xxx

Monday, December 21, 2015

Tis the season to be jolly and thankful...

...or so they say.
A mere season within which to be jolly? Maybe. A mere season within which to be thankful?
Sam deals with a few more challenges than the average kid, so you'd expect me to be super aware of becoming complacent about the things he does not struggle with...breathing, sight, hearing, oral feeding, reasonable mobility (albeit it knee-walking)...but yet every couple of days the universe throws a reminder at me about the countless difficulties we do not have to deal with and, more importantly, a reminder to be unceasingly thankful for, what is to many, countless blessings.
Becoming a part of the Daniel and Friends Fund was already a mind-altering revelation for me into how much more of a formidable journey many families are facing and quickly put into perspective our own challenges. But oh, the Universe was not yet done with me. Getting to know and love these families whose children battle conditions like Spinal Muscular Atrophy, Congenital Heart Disease, Spastic Quadriplegia and chronic, heartbreaking Epilepsy, where having 20 seizures a day before the clock has barely struck 10am is the norm, was not yet enough insight. No, the Universe concluded, you need to see more.
And so our paths led us to the Sive Nathi Licensed Home in Blackheath, a home which provides fulltime care to 40 children who suffer with severe disabilities (mostly Cerebral Palsy). Not only do these children face profound challenges each and every day, but they do so without the comfort and nurturing of being part of a conventional family. Mostly abandoned (due to the inability or unwillingness of their families to take care of them) the children at Sive Nathi Home know only the facility's carers as the consistent adults in their lives.
Of course I knew facilities like Sive Nathi existed, but to go in and see the little faces...touch a fragile little into a heartbreaking pair of eyes, was just something else completely. Yet still, despite circumstances most of us could never even imagine, there were plenty of smiles and heartwarming clips of laughter.
Don't take things for granted...there's always someone worse off than never know what kind of battle someone else is fighting - all sentiments expressed regularly, often too lightly.  It's fairly easy to entertain these thoughts "from a distance" but not that easy to comprehend completely until you've had the opportunity to witness these struggles up close and personal. And, yes, I say "opportunity" because that's exactly what it invaluable experience for those who occasionally find themselves wishing their lives were on a different path, to be able to surrender to some necessary self-reflection in order to appreciate that that "different path" might be one far more challenging.

Our visit to Sive Nathi is shared in more detail with quite a few beautiful photos at Daniel and Friends Fund BlogSpot, but one of my absolute favourites....

Five year old Mosa...a charming young man who
absolutely delighted in the attention and had his
enchanting little smile on the ready the moment he
spotted the camera.

Thursday, November 19, 2015

Smurf! Smurf! Wherefore art thou Smurf...

Sam's had quite a busy month and a bit, leaving mom little time for blogging...but thanks to my ever-handy phone camera, creating a timeline of the last few weeks is a delightful breeze.
At the beginning of October Sam was off on a road trip to Stilbaai to visit his Ouma and Oupa and cousins Hendrik and Boeta Dirk. 

After a fun weekend of seaside walks and being kept entertained by all the goings on, one would have expected the 4 hour journey home to be filled with blissful silence? 

It was not. 

It was instead filled with a non-stop,throat-annihilating screeching which proved distressing to the point of tears for at least one of the car's occupants (not Sam). It was not the first screeching episode of the weekend as this seems to be Sam's new chosen method of communication whenever he is unhappy about something but it was by far the most traumatic. 
The following week Sam was ROCKING his new AFO's! And I say "rocking" because one of the main reasons for not doing AFO's sooner was that we were pretty certain we'd be wasting an alarming amount of money on something which Sam would regard with the same amount of distaste as he does shoes and socks. With a completely resistance-free,  8 hour long wear on just the FIRST day we are beyond impressed with how tolerant Sam is being with these "boots of hope"! It has taken him some time to get used to actually walking with them on, which is pretty understandable especially as Sam makes use of his angulated big toe to sort of anchor him to the ground, but both Cornelia (Sam's physiotherapist) and I can already see the difference having a solid base of support has made to Sam's walking. 

With Sam weighing in at a cool 24kg's, which seems to be increasing almost on a daily basis, having him being able to walk independently would be an incredible blessing to both mine and Sam's physical wellbeing :D 

Sam's sleeping is, again, non-existent. And not because he doesn't want to sleep, which is perhaps the most frustrating part. For some unfathomable reason, what seems like a bucket-load of mucous seems to form in his airways at night and he spends hours trying to choke his way through to some actual breathing. It has been going on since the end of September so by now, as I am sure you can imagine, we are ever so slightly sleep-deprived. 

Three Saturdays ago Sam had two seizure episodes. We admitted him the following Thursday really just for observation, but when his ENT saw some fluid in his ears and an indication that Sam's sinuses might be blocked up, it was decided that a 3rd set of grommets and sinus wash would be in order. The surgery was scheduled for the Friday but Sam had an unexpectedly decent night's sleep on the Thursday already. Being "nil per mouth" from 7:30am already and only going into theatre at 2pm, Sam was such a little trooper. He only started asking for something to drink about an hour before he went into theatre. 

The procedure was over in record time and Sam was monitored overnight in ICU. Again, he absolutely blew me away with how well he did with having all those beeping little gadgets attached to him, not to mention tolerating a drip in his hand (!!!) which has always been a HUGE no-no and is usually removed within an hour due to him bashing the bandaged hand to the point that the drip in any case no longer works.
As with most of Sam's ENT procedures, a little snottiness can be expected afterwards, more so this particular time with him having been snotty in any case beforehand. Surprisingly enough though, he had another decent night's sleep the second night...despite trying several times to sleep on his stomach, monitors or not. But his very first night back at home and we were drowning in mucous again and apnoeaing a-plenty. The only explanation it seems is that there is something in or around our home to which Sam is having some sort of respiratory to figure out what. Process of elimination is not working out that great hindered even further by the seasonal change which, this year, seems to have affected many.
Sam and his never-ending worry that the ducks at the local pond are just not being fed enough, just as worried (it seems) as to whether they are all safely where they're meant to be as he attempts to do a headcount of all couple of hundred of them...on just two unique little hands.

Goofing around with his Big Sis xxx 

Wednesday, October 7, 2015

When you're missing a part of you...

...but don't know which one.
It's not like you're consumed with sadness or given to overwhelming bouts of hopelessness, although feeling hopeless certainly does raise its ugly head every now and again. It's not that you no longer find joy in your life or fail to appreciate the wonderful blessings that come your way, in fact sometimes you now find joy in things which before might not even have held your attention for a second or you'd have taken for granted instead of cherishing as a blessing.
You still laugh, still love and perhaps live life more passionately and with more purpose than you did before..."before" being life prior to becoming the parent of a child with special needs. You're a stronger, more determined, more resilient, more vulnerable, more giving, more humble, more thankful, more intense YOU! So much MORE of who you were before. But yet, there is still some part of you that is missing, perhaps a very small part of you but which absence occasionally ignites a feeling of restlessness and anxiousness.
You're fine. Really. Not surrendering to the likes of a diagnosis or three...not completely resigned to sacrificing the dreams you had for your child/children, but real enough to know those dreams might require travelling a path you had not anticipated. But still, you find joy therein as a new path brings people, friends, family into your life you might never have had the pleasure of knowing. You're fine. Really.
And then, as you spend your day posting your support in raising awareness for your child's "third diagnosis"...the one which blindsided you so after having made peace with the first two...peace which had taken years to revel in and find hope hits you. You stare at your screen, you type the words, you acknowledge your tormentor...the missing part of you...the part from which you used to draw unfaltering confidence that it was going to be okay.

Wednesday, September 16, 2015

From Smurf to Ninja King

There are a number of things that can be said about parenting a child with special needs, but one thing which would most certainly not be included amongst them is that life is boring. In any way. Ever.
Sam has taken it upon himself to ensure that every man, woman and child within the greater Cape Town area is equipped to defend themselves should they unexpectedly be the victim of a sudden act of violence. To this end, he passionately dishes out blows of varied strength to random people as he sees fit...whether you be his sister, physiotherapist, friend, fellow-customer in the local fish shop or (calm my bleeding heart) a local celebrity who your mom and her fellow charity directors are trying to secure as the "face" and ambassador of said charity. #shame#cringe 
In other words...the kid smacks. Everyone. All the time. Sometimes because he's agitated, sometimes because he's tired, sometimes because we're not understanding what he's trying to communicate, sometimes because you're too close to him (whether your fault or not)...sometimes to initiate a reaction and sometimes just for the blatant fun of it. Yes, really!
Of those, the most traumatic episode for sure was the customer in the fish shop. It was Friday night at an already busy supermarket and just before supper time too. Battling lately to physically cope with Sam's 20+kg's on my hip, I set him on the floor to walk around a bit (assisted walking of course) as we waited for our order. Before I had even had the chance to "settle" Sam on his feet, a lady brushed passed him and instantly, in a flash which would put any ninja's reaction time to shame, Sam reached out and smacked her on her leg. In an equally impressive turnaround time, Sam's hand was grabbed and held while the recipient of his latest self-defence drive bent down and said harshly into his face "Moenie dit doen nie!"(Don't do that).
I took Sam's hand away from her and while trying to put some distance between the two of them, began apologising and trying to explain, only getting as far as "I'm so sorry, his Autism..." but before I got the chance to finish my "...makes him anxious in busy environments, particularly when too close to others" I had a "Moenie dit doen nie! delivered up close and personal in my own face. Um...HUH? She proceeded to explain to me how my child is a gift from God and how her third cousin's, step-sister's neighbour from seventeen years ago also has a child with Autism. When her impromptu tutorial on Autism began broaching on the subject of educational options for children with Autism, I decided to take my leave and exit the shop, amidst several stares of unknown nature...I was not about to look around and take account of who was with this lady on my apparent lack of knowledge and guidance on all things Autistic, not having that third cousin's, step-sister's neighbour from seventeen years ago as a valuable source of reference and all.
Thank heavens I did not mention Rubinstein-Taybi Syndrome and/or Cerebral Palsy! But, hey, way to completely divert your social blooper lady!
In the lil dude's somewhat-flimsy defence though, at that stage Sam was averaging about one-and-half hour's sleep each night...I reckon I might be pretty smack-happy too then if I had had less sleep in the last week than what most folks had managed in one night. Thankfully, our Prof Prof seems to have nipped those sleepless nights in the butt for us! After three consecutive consultations wherein he expressed concern that Sam was possibly experiencing seizure activity throughout the night, disrupting his ability to reach deep sleep, I decided to trust the knowledge and expertise behind his several degrees and give the suggested Epilum a go, taking comfort in the fact that should it not be seizure-related (or some other funky brain issue going on) and there is no improvement, we can simply stop the Epilum without any detrimental consequences.  With the well-known jinx which historically flips anything sleep-related I mention on this blog, I choose instead to share with inconceivable joy and relief that we are currently loving Epilum!!!
Truly a sight for sore eyes!
Over the years Sam has had many interesting objects be the focus of his attachment-obsession issues. From spoons to blankets, dolls and (his all-time favourite and often revisited) books. The AOO of the moment is....wait for it....empty dvd covers. The best part about this particular fascination is that he tries to gather as many of the covers as possible and has a meltdown of note should he lose his grip.  As I said...anything but boring!
Falling asleep with them is a gem of a situation to experience.
The second Sam feels just one dvd cover slipping, he wakes up to
retrieve and re-secure his grip on his "stash". Oh...did I mention we
now do naps in the car? (Taking into consideration four hour long
trips to Stilbaai seldom consisted of any shut-eye!) Actually, we now
regularly do naps in the afternoon...almost EVERY afternoon. Yip!
Another new favourite pastime for Sam is stopping at
the local pond to feed the ducks. As adorable as what
this is, there are one or two minor issues :
A) We drive passed this particular pond anything
between 2-6 times a day, with Sam requesting
to stop and feed the ducks each time.
B)There is only a certain amount of bread one
can keep in store at any given time.
Neither of these are issues Sam seems to see as particularly relevant.
And just for fun xxx 

Monday, August 31, 2015

Potential Capped

Statistics vary considerably on the number of people in South Africa living with disabilities, but the estimation is somewhere right up there round the 3 million mark.  Of those 3 000 000 people, anywhere between 500 000 - 900 000 will go unschooled.
500 000 - 900 000
As in somewhere between half-a-million to almost ONE!MILLION! children will be robbed of their right to an education simply because the inclusion infrastructure in this country is as flawed as our ability to collect efficient stats. Urrrrgghhh!
"Ineducable"! (One of the words used to describe Samuel's prognosis when he was born) 
"Considered incapable of being educated..."  
Many of you have heard the following a million times over so feel free to skip to the next paragraph - this word ineducable...capable of stripping one of every ounce of hope you might manage to salvage for the future. A word that instantly became my personal demon, to the point that I became near-obsessed with doing everything in my power to expel it from our vocabulary. Numbers up to 20, all letters, colours, shapes mastered by the age of 3...applying counting skills, a signing vocab of near 200 words...capable of reading just as many words...all by the age of 5 and despite having three separate conditions affecting his brain. 
Yet, at just six years of age my son has been rendered ineducable...not because he does not possess the potential to learn, but because there are no facilities available to guide him towards that potential.  Schools for physically/neurally disabled kids? Yes! Schools for children with Autism? Yes! Special Needs Schools for children who are equally challenged by both? As scarce as hen's teeth! Mainstream schools which would consider accepting a child whose brain functions brilliantly but has not yet found the right "sync" with the rest of his body? You've got to be kidding!!!
It is beyond sad.  This kid, reading through his dictionary.... 
...this kid deserves to have his potential recognised and catered for, especially by a country shrieking daily about the horrendous crimes of discrimination.
Vent over xxx

Monday, August 3, 2015

The Darkness Cometh!

And by "darkness" I am referring to that depressing, life-halting, germ-yielding, just-plain-dismal time of the year otherwise known as Winter! Bleh. Yes, I am a classic Seasonal Affective Disorder sufferer who finds it incredibly difficult not to succumb to irrational bouts of envy when seeing her overseas friends posting pictures of all things Summer...just can't help it, sorry guys! Thankfully, a little S.A.D. (a rather appropriate acronym, or what?) has been the least of our worries the last Winter or two...but YIKES! did Sam ever make up for it this time round.
A couple of days after my last post, the little dude landed up in hospital with Rotovirus. It absolutely floored Sam, who spent almost a solid week napping his time away...and we're not talking Sam's usual mickey mouse naps of like fifteen/twenty minutes. We're talking like 3-4 hour naps! Yes, really! Then you know for sure that the lil dude's struggling. Sam was discharged the Sunday and by the Wednesday morning we had to make another trip to the ward after Sam woke up sporting a 40.3c temp. I was pretty sure it was the remnants of that darn Rotovirus, hanging on to wreak its last bit of  havoc, but Prof Prof seemed to think it was something new brewing. Nah, I thought. No coughing or congestion...definitely Rotovirus. By 4pm that afternoon Sam was coughing and snotty. #sigh
I tried to manage with some OTC meds for a couple of days, but by the Saturday I had to admit defeat and accept a script for Celestamine. My lack of warrior spirit might well have been influenced by my own coughing and snotty constitution, forming an all-round, family partaking (with the exception of Papa Bear) in some pretty nasty flu. 
It is not unusual for Sam to struggle with sleep and a general sense of being unsettled after a hospital stay - it is the very reason why I try to cope at home with his illnesses before resorting to admission (obviously without leaning towards negligence of course). With the exception of the first night in hospital, Sam slept through every night...waking only to protest aggressively whenever a nurse came in to check his stats. But from the first night at home, Sam battled with sleep...the first few nights found him bodybashing himself around between midnight and 2am-ish, but soon we were back to our old demon...bodybashing anything from 11pm till 4/5am each morning. I don't know how I coped with this before, but this time round neither Sam or I managed the severe sleep deprivation well at all. Last week Tuesday we headed off back to Prof Prof, after almost a week's surviving on just 1-2 hours sleep each night. After advising that Sam's throat was a little irritated, probably caused by a nasal drip, and that his gums were looking a little fragile thanks to him cutting his molars...we headed home with a new script. Yay! Sam's teeth generally take MONTHS to eventually make their way through.  Months with only a couple of hours sleep a night? "Sure, we can do that!" she says laughing hysterically!

Although the meds certainly did help some, I kept thinking back to those night's of blissful sleep in the hospital despite Sam actually being really ill. The major difference between hospital and home was that at home Sam was still sleeping in our bed, smack-bang in the middle to prevent him from hurting himself when bashing, while at the hospital he slept in his own bed. So Thursday we decided to go out on a limb and move house without the actual benefit of a brand new other words...rearrange our bedroom, which in turn meant rearranging almost the entire house! Sam's bed was relieved of the storage facility it had merely become and pushed snug up against our own bed (baby steps). And? Well, with some very light bashing every night around 1am every night, Sam has been sleeping comfortably there ever since.  As much as what he wants to sleep in our bed, being in his own bed is obviously far more comfortable and, it seems, partly responsible for his disrupted sleep.  And of course the quality of sleep I am getting being able to actually relax my muscles without the fear of falling off the 10cm little scrap of bed I was left to rest on each night, is quite delightful too.  Sam's still battling with his teething, his super-flushed cheek and relentless teeth-grinding tells me so...but he is at least getting a decent amount of sleep at night now. And who knows? Maybe the next six years will see us actually moving his bed a couple of cm's apart from ours....the sky's the limit folks.
 And some pics to catch up the last month...the parts which weren't spent sick in bed :
Sam's bestie, Smokey rabbit, and Sam having a moment
On the 18th of July, The Daniel and Friends Fund families were treated by Reach for a Dream to an awesome morning at the Aquarium. Sam was so well behaved and lasted a full five hours with only a very minor meltdown in the beginning when I stepped away for a few minutes.  We were so very proud of him :)

Family snap xxx 
And, thanks to our little germ-fest, with the exception of multiple doc visits and shopping sprees to our local pharmacy, that's really the only exciting stuff Sam's been up to!!! Roll on Summer xxx