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)

Friday, January 24, 2014

Accessorise! Accessorise!

Move over Louis Vitton and Prada...I have recently acquired the ultimate fashion accessory.
Behold...the DNY all-purpose carry all!
Perfectly designed to catch and store the most ghastly of throw-ups with a large, easy-to-aim opening and readily disposable container. The product of a spontaneous brainstorming after last Friday's art class, when Sam spewed his entire stomach's contents all over the inside of the car, at the sighting of unfamiliar territory...before I'd even managed to get him out the car. 
This was the before picture...I thought it best not to capture the after picture LOL!

Several times over the days leading up to Sam's very first art class, I let him watch a video of children painting pictures, as well as on the Friday morning hoping to prepare him in a way for the morning's planned activities. I knew Sam would not hold a paintbrush, so opted instead for finger paints especially as he seems quite keen lately to try different textures on his hand, even textures which previously freaked him out, like bubble bath.  But of course before getting down to any painting there was the matter of transitioning him from familiar hence safe (car) to unfamiliar hence threat (never before visited home). Transitioning is definitely an issue with Sam at the's that vulnerable space between the safe, solid chair to the safe, solid floor.
My first reaction was to surrender and head our vomit-covered smurf home. But after encouragement from the wonderfully supportive other moms, decided to stay and although Sam refused any kind of painting and moaned occasionally, we spent a good hour just enjoying the other children proudly tackling their activities. 
Already caught up in a particularly challenging wave of anxiety, the severe lack of sleep happening in Smurfville is most certainly not helping at all. From Friday evening till Tuesday, Sam's sleep deteriorated from being awake roughly between 12am and 4am to less than two hours sleep on Monday evening. Sam woke just after 10pm and that was it, he bashed himself senseless and to the point of acquiring a few bruises, until just before 6am at which point it was easier to just admit defeat and get up. I was convinced there had to be something bothering him so went off to the doc but Sam received a clean bill of health. Sam's been having some urinating issues again and over the past few days going anything between 12 to 16 hours without a wet nappy has become the norm, despite drinking at least 1litre of fluid every day so I was looking forward to mentioning this at our neuro appointment on Wednesday, but quite distressingly the appointment was cancelled due to some sort of miscommunication regarding Sam's neurosurgeon's availability. We did do a urine test on Tuesday to rule out a UTI, which it did.
Another issue I wanted to raise at Wednesday's appointment was the possibility of Myoclonic Seizures. Quite some time ago I complained that Samuel's body twitches and jerks all through the night...his legs, his arms, his hands almost constantly and even his head. So much so that it lifts off the pillow sometimes.  Somewhere along the line I recall the term Myoclonic Seizures being mentioned on one of the SPD support sites. I paid little attention, reassuring myself that even though Sam's only had 5 seizures in his lifetime I would most certainly recognise it if it happened again. Then over Christmas Sam had that lovely little virus visiting his tummy and I awoke one night to him having a very short, but definite, convulsion. The first two convulsions he ever had were febrile convulsions caused by the onset of a nasty tummy bug, almost three years ago to that day. I kept a close eye on Sam for the next few days and decided to go read up on Myoclonic Seizures after all, just in case, only to discover that they are in fact not "seizures" as such, as I  had presumed, but rather a series of spontaneous jerking, etc. An extra bonus was that there are a few video's on Youtube actually showing what it looks like and it pretty much looks exactly like what Sam's little body is doing through the night, which would sort of explain why peaceful sleep escapes him. 
So, again, really disappointed that Wednesday's appointment didn't take place :(
Finally, Wednesday evening saw us enjoying at least a little sleep. Not a full night's, but there was more sleep than wakefulness...which becomes quite good enough. Thursday morning was Sam's first group outing -  to the Fire Department! Really exciting, particularly for me, as Sam loves doing the "fire engine" sign. Thankfully we avoided vomit for at least the first half hour, although Sam preferred observing the fire engine and the other children from a distance. When the firemen turned the water on, that distance entailed Sam and I having to leave the actual fire station and watching from outside the front of the fire station, through the great big doors. There might have been vomit, but it was just a little...not even enough for me to have to reach for my DNY but easily cleaned up with a wet wipe. That little bit of vomit though was quite a blessing as when rushing to the car to retrieve the wet wipe, I discovered I had left my car door open the entire time. GASP! These kind of are becoming a bit too frequent. There has been the occasional bottle or phone left on the roof of the car and en route to the Fire Station on Friday I suddenly found myself at the local high school, not too far off my intended destination (barely a kilometre or five) but still just a tad worrying. Surviving on 1-2 hours sleep a night, I would have imagined far more perilous consequences so we're still good for now. And boy is that a good thing, because last night we did another whopping amount of bodybashing from, again, round 10pm till just before 5am. Thankfully Sam fell asleep then for just over three hours, giving us just enough time to make it to physio which lasted all of 20 minutes as Heidi was unable to work with the fearful and fight-or-flighting little dude :(

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

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

Thursday, January 16, 2014


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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, January 1, 2014

The Lighter side of Sensory Processing Disorder

Sam's newly acquired aversion to the sound of running water and, more importantly, the sound of running water hitting any kind of surface has become quite entertaining.  Last Sunday Sam had another vomit session at Church (Yes, really #sigh). The first thing we did once he stopped puking was walk him over to the outside tap to try and wash off his hands, hoping to make transporting Pukey Smurf a little less challenging. Well the poor kid jumped a metre high when the water hit the paving outside, almost starting the puking all over again.
This interesting new twist has kind of put a damper on my wanting to try Sam with some potty training this Summer.  I thought the least "pressured" step we could take would be to let Sam have a wee in the garden.  Well two major problems with that one a) he won't stand on the grass and b) that would entail him having to tolerate the sound of his wee hitting the grass.  It just ain't gonna happen folks. Quite amusing is the fact that he has taken a liking to having a whizz on the bathmat at night while I am undressing him and the sound of the little pool forming on the mat does not seem to bother him just one bit.  So the only thing I could think of was a fur-lined potty. JUST KIDDING! Well kinda, if I thought it would work I'd certainly try it.  Just for laughs though I googled fur-lined potties and actually found one! Unfortunately the fur would have to be at the bottom as that plastic bottom would definitely make for some serious startling. Nevermind the laundering challenges that would pose, although having to wash the bathmat on a daily basis is not much fun either.  

Luckily most of the moms on the Sensory Processing Disorder site have shared that trying to get SPD kiddo's onto a potty is almost impossible so we are being spared the epic fail that would come from fur-lined potties.
More seriously though, this SPD thing has us beat at the moment.  First there was RTS and having to adapt to a set of specific challenges.  Then 19mnths later, having just started feeling like we were sort of keeping head above water in the RTS ocean, along came SPD.  There, but pretty much in the background with the exception of some conquerable little quirks like keeping Sam away from sunlight (which caused him to scream as if in pain), making sure his milk was always the exact same temperature, etc etc while we still grappled with the more serious RTS issues like a tethered spinal cord, undescended testes, etc.  Then after that first testicle repair all of a sudden SPD was right up front giving RTS a remarkable run as most puzzling condition.  And now? Now Sam's sensory issues are by far more perplexing than his RTS issues. Why would the SPD issues be troubling us more than the RTS issues? Because, to a certain extent, we are at least prepared even if on a shortterm basis, for what to expect...what to look out for with RTS. But oh my gosh, no such thing with the SPD.  Sam's "symptoms/triggers" are changing almost on a daily basis. It's like having a different "condition" to master every morning, a different little person to nurture and securely guide through each day...every morning. It's pretty darn exhausting I tell you.
All of a sudden we are doing loads of gagging and then inevitably, throwing up again. Last Sunday we attempted to sit with Sam in the baby room during the Church service as it was empty.  Sam has not been in there for a while, maybe two months at the most, but there was a stage where that's where we sat with him every Sunday. Everything was going okay until I decided to move from the chair onto the floor with him, again what we would usually do most Sundays. And for some reason transitioning onto the floor has now become a major gagging trigger, even here at home since then. 
The v-wording thing is really hard for sure but Church being a gag/defensiveness trigger? Without a doubt one aspect I could least come to terms with. 
And as baffling as Sam revisiting his extreme fear of being moved around (we did this almost exactly two years ago when I struggled to get him into and out of his carseat, etc) is this....

For the first time in twenty-eight months he is quite comfortable with moving from his knee-walking position into sitting on the floor again..all on his own.  Not only that but about a week ago Sam started standing up, completely unsupported, on the bed.  I've tried desperately to take a pic but I am so scared of losing sight of him and having him somersault off the bed that I haven't quite captured a clear shot yet.  He can only manage about 10-15 seconds but each and every day his balance improves and he can more easily right himself when it looks like he might topple over. sum it up, having mom or dad lift him from the couch to the floor is an absolute gag-worthy No No! As is running water and the bathrooms and baby room at Church.  But suddenly sitting all alone is like so blasé as is standing up for the first time EVER!  Baffled? Yip, me too!
Sometimes I wish with all my heart I could simply ask Sam what troubles him and what I can do to make it better.
But I can't.
I don't speak Smurf :(

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

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