Sam. Conqueror. Overcomer.
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 happening....to 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)
Sunday, December 21, 2014
Wednesday, December 3, 2014
On Sunday afternoon we were celebrating with chocolate ice-cream after several fairly easy-going outings with Sam recently. On Sunday evening we were catching vomit and sporting a lovely temp of 38.5°Cish, by Monday we were not eating and now had an impressive temp of 39.4°C and by yesterday we were off to Doc Paed for some answers and hopefully the hope of some sleep in the near future.
But sleep in the near future it was not going to be...bearing in mind that by "near future" I mean NOW! Seeing as it is 10:43pm and I am blogging instead of getting some sleep before Sam wakes up.
WHAT. AM. I. THINKING???
Okay that's the end of my post. Over and out!
Juuuuuust kidding :D
So Sam has a really interesting little condition known as Gingivostomatitos which has effectively caused painful ulcers all over his gums, in his mouth and in his throat. Up until a week or two ago I might have been able to pinpoint quite easily where Sam caught the virus but over the last week and a bit we probably came into contact with close to 50-60 people and several public baby-changing rooms, etc so I fear we'll never know where it came from.
Treatment involves a 3-day course of antibiotics and a 10 day course of Lovir, which is going swell as within 2 mins Sam vomited up two doses of each med leaving us with only one full dose of antibiotic left. So we're basically running on prayers right now. It reportedly takes about 7-10 days for the virus to clear up and the virus is extremely contagious which is fabulous when you're constantly being given love and smooches by a certain Gingivostomatitos-yielding lil dude. I'm so hoping it's psychological but my own mouth has a very worrying 'sting' to it this evening :(
Tuesday, November 25, 2014
So it's a funny story...well maybe not so much funny as humorous. Okay, maybe not as much humorous as WHAT.WERE. YOU. THINKING...ISH...Y(?)
Still lost with the return of our bashing-filled nights and increasing number of behaviour issues (now having added teeth-grinding to the list) I asked Doc Paed if he thought the Risperdal could be the cause of much of our issues and whether I should try weaning Sam off it. Surprisingly Doc Paed's reply started with "Perhaps the Risperdal should be upped, not stopped..."
WHAT? NO!!! A million times NO! I'm still coming to terms with the original prescribed dose and the mere fact that my 5yr old is even on an anti-psychotic medication. Mmmmm...about that 'original prescribed dose' though. You know, the one that I independently decided to decrease to the recommended dosage per weight in the always-studied pamphlet, as opposed to the dosage prescribed by the qualified, over-efficiently experienced paediatric neurologist. And which independently modified dosage was based on an almost 4kg lighter lil smurfy dude!
So, increased Sam's dose of Risperdal to what was originally prescribed and, although we've had one or two iffy hours occasionally, sleeping on the whole has improved. So mom doesn't always know best...who woulda think it!
The headslapping and irrational reaction to people moving around him remains, accompanied now with the teeth-grinding as mentioned, but they seem a little easier to tolerate when one's had some sleep xxx
Sunday, November 2, 2014
I think we're close to a new record here...Sam is nearing one and a half hours of non-stop bodybashing in desperation to get himself off to sleep. And the only change in this evening's routine I can pin it down to is the fact that he had his bath before his dins, instead of after as usual, thanks to our wonderfully efficient powers-that-be choosing a Sunday evening to be the headstart of loadshedding. I thought it best to give Sam his bath before the water in the geyser cooled too much as the only thing worse than Sam having his bath at a different time would be him not having it at all. So instead of the usual 30-45mins of bodybashing we're doing double time. Yay us!
Another new record and, at least a celebration-worthy one, (I think) would be that for the first time in over a week Sam pee'd in his nappy today. He will sometimes have his morning wee in his nappy, but even then has held it in until we take him to the potty. But aside from the occasional morning wee, we are basically just using one nappy a day which usually gets binned bone dry. Here's why there's a bit of concern regarding what would usually be a mind blowing accomplishment for a child with Sam's challenges...it seems as if Sam is now afraid to go in his nappy. So I have to make sure I take him to potty regularly otherwise he holds it in for hours. Here's how that gets even trickier...as mentioned here before, Sam does not sit on anything unfamiliar to him. And by unfamiliar I mean something that is not a very regular part of Sam's daily routine. Let me give you an example, during the week we very seldom go anywhere as a family. But over weekends we will travel as a family in Chris's car which has a kiddies chair in it but because Sam does not sit in that chair every day, each weekend's travelling is as traumatic for him as if he were being placed in that chair in that car for the very first time in his life. The first journey or two he is so petrified that he can barely breathe and just hangs onto the sides of the seat as if he were dangling dangerously over the edge of a cliff. Eventually by Sunday he'll chill enough to shakingly (yes, really) hold onto a book. And then it's mom's car again for 5 days and we're back to square one! So getting Sam to use a public toilet is not (and I fear, never will be) an option. On Thursday I had to run a few errands and take Sam in for a scan en route as well. We were in the car for at least 3 hours, during which time Sam drank a bottle. When we got home his nappy was completely dry! This evening he was sitting on the bed with me and all of a sudden frantically grabbed his nappy and gestured towards the bathroom. I was beyond flabbergasted...it was the first time he'd indicated to me on his own that he wanted to use the potty as opposed to me just taking him every hour on the hour. When I opened his nappy there were two or three little wet drops...he must have suddenly realised (for whatever the reason) that he needed to be doing this standing up :D
Never in my wildest dreams did I ever have imagine that Sam would not only be potty-trained by 5yrs old, but within ONE WEEK! I mean HALLO!
And certainly worthy of a second mention (especially as the first one was a Faceboast) while sitting schooling with Sam one morning, he breezed through 48 flashcards of the 50 I had presented to him for reading. One super chaffed mom here :)
Okay so onto the scan...the aim of which was to determine whether the little mass of tissue in Sam's scrotum was the died-off remains of Sam's sole surviving testicle or rather something else, leaving the question as to where that little testicle might be hiding.
So the good news is that the little sac was completely empty (good in that if it wasn't a teste it might have been something more sinister) and that our missing teste was located in the inguinal canal, alive and well, and not yet completely homeward bound to just under Sam's ribs where he and his deceased brother had originally been relocated from. Phew! We will have to attempt bringing the teste down again but seeing as Sam's grommets are hanging at odd angles from his eardrum, I'm waiting patiently for that first ear infection (should come early next year) and then we can group these two procedures together along with a thorough Glaucoma examination under anaesthesia which Sam has not had in 18 months.
And, on a bit of a sad note, I've had to chop Sam's lovely boyband style hair off! He's developed this really unsettling habit of yanking his hair out in handfuls and hitting himself aggressively on the head. At a loss of what might be causing this new behaviour and in sheer desperation to see it end, I hoped that perhaps with Summer settling in it was simply Sam's way of trying to tell me that he was getting too warm under that lovely mop of hair. Unfortunately, although the hair-yanking has obviously stopped, Sam still keeps hitting himself on the head. It is rather disturbing. Since Sam has been on the Risperdal he has developed an alarming number of bad habits and side-effects...but what a Catch 22 situation! Despite the amount of time it takes to fall asleep, Sam does definitely get more sleep than before the Risperdal. But it is still not what I would call quality sleep and is loaded with all these other new issues! What to do...what to do!
Tuesday, October 21, 2014
Silence is golden they say...sometimes it's just silence...bursting at the seams with so many thoughts and worries and confusion, which putting words to seems to magnify...so rather, silence :)
Silence, however, can also simply be the result of being totally preoccupied with concocting up the most creative and convincing defense arguments for the countless assault, vandalism and similar charges you are inevitably going to be delivering on behalf of your 5 year old son!!
Sam has never been crazy about people coming into his space, but as he gets older his space seems to be growing at an alarming rate (currently about a 5m radius 'bubble') and now applies to things as well as people.
If making like an ostrich and burying my head in the ground when being overwhelmed with embarrassment and awkwardness was an actual possibility, my side of the Earth would strongly resemble a giant golf ball! Whether it's the kindly old gentleman turning around in his seat at Meghan's school function to coochie-coo Sam, the lady who suddenly appeared out of nowhere to squeeze passed our snugly positioned trolley (in which Sam was a passenger) in an already sensory-abusive supermarket or the young couple who unknowingly pushed their trolley tightly up against Sam's stroller in a crowded lift...each incident was met with the same intense and hostile behaviour from Sam (not even slightly deterred by the pain he must have felt when slapping the trolley in the lift). It's mind boggling for sure how his sensory challenges just continuously change and intensify.
But, as is almost always the case, there is another matter which so overshadows our Bash-full Smurf ;)
And it's also another reason for being a little quiet, fearing that sharing might attract the usual jinxing (you know, like v-wording and being healthy). I'm hoping that 'this' has been going on long enough to be a permanent part of our lives.
For the last 10 days Sam has not only pee'd in the potty every night, but has gone THREE whole days on just one nappy, which nappy comes off dry at bathtime! Yip, I believe our little dude is well on his way to being-potty trained...how awesome is that? Of course there's a twist. Would it be Sam if there wasn't? He refuses to sit on the one-and-only big enough potty we searched endlessly for, which is making for some entertaining housekeeping when standing over the potty and not all parts are adequately aligned or little curious hands go a-wandering :D But not for a second does this dim such an awesome step from Sam xxx
Looks like the most chilled, serene little guy ever - ppffftt! LOL!
Thursday, September 18, 2014
...of Sam's left testicle is suspected. You know, the testicle which (so it seemed) had made a relatively safe relocation from it's original position up yonder abdomen, unlike it's rightside counterpart which had to be evicted. I noticed a while ago that that little testicle, apparently homesick, had gone MIA. Upon closer examination yesterday, Doc Paed discovered that the empty...um...housing unit (?)...was not so empty after all as there appears to be some sort of small mass of tissue there but not the right size or consistency of a healthy testicle. We will of course confirm with a scan but it seems very likely that the lil Smurfy dude is now testicleless. Yay for hormone replacement...when the time comes, of course. Although I'd be lying if I said I'd be totally devastated at having to skip another dose of teenage hormones.
Matters of all things testicular was not the sole purpose of our visit to Doc Paed yesterday. First and foremost was the wheezy/congestion/coughing issue and then the fact that, at the time, Sam had gone 4 days without a bowel movement (and here you thought we were moving into less 'eeeeuuuuuuu' territory! ).
It's a bit of a catch 22 really. While, most of the time, Sam seems very ready from a sensory perspective to move onto more solid food, his digestive system just doesn't seem in sync. And it's about the fourth time now that we find ourselves dealing with constipation/impaction problems this year...which inevitably leads to urinating issues and what not too. So we're back to pureed foods and our good ol friend Pediasure, as well as a hugely increased dose of Movicol which already seems to be helping as we've had about 4 poops this evening. No spectacular proportions yet, but at least there's movement. Yay!
Antibiotics and some Celestamine for the throat and sinuses but I can hardly complain as Sam's had a pretty good run through winter this year. He's grommets are apparently sitting at very odd angles, no doubt working their way out but given that they were only meant to last about 12-18 mnths and it's been 15 months now, it's really quite expected.
And one of Sam's newly acquired skills is stripping, because teaching him to undress himself seemed like a good idea at the time. When I tried to get him to nap the other day (Bwaahaha...napping! A momentary lapse of reality) Sam decided to strip in protest. When he only managed to remove one layer of clothes, he stripped the bed instead. He was finding it all too amusing...until I made him pick it all up afterwards (with me being his 'walker' of course)...
Wednesday, September 17, 2014
...let it gooooooooooooo!
That's what I've told myself at least ten...twenty times this evening. But myself just isn't listening to myself.
We went to watch Meg's school concert tonight, with a little help from our friends at Iris House in the way of a respite carer for Sam.
So we're sitting there watching the Gr 1's rendition of Frozen and I think to myself "Boy, these kids are so tiny! "
Meg was tiny too.
Seven years ago.
This is Meg's last primary school concert.
This is my last primary school concert.
Sam won't have a primary school concert.
Sam won't have any concert.
I want Sam to have a concert.
I want Sam to be dancing around in an oversized Olaf costume, trying to find my face in the crowd.
I want to be cheering him on alongside the hockey field.
I want to chat animatedly about what Sam wants to be when he grows up.
I want to tease him about the little girl who smiled sweetly at him in the shops.
I want to write out birthday invitations for kids HE HAS asked to his birthday party.
I want to ground him for not doing his chores.
Sometimes I just want normal.
I hate the idea of normal...bleh!
But sometimes my heart breaks for normal.
Wednesday, September 10, 2014
Do you have any fears? The crippling kind? I do...it sounds ever-so cheesy and overdone but I have a very real fear of heights. The kind of fear of heights which had me near hysteria on a ferris wheel...despite being in my early 20's...while my 5yr old son sat calmly next to me, enjoying the sights of the festival below. The same kind of fear which prevents me from looking down lift shafts and enjoying the delights of Cape Town's most loved attractions like the cable car up to Table Mountain.
So, if I had to imagine what it would be like to live each and every day...every hour...facing fear, I would picture myself trying to perform everyday functions while teetering on the edge of a ridiculously high cliff. And just thinking about the most simplest of activities, like walking, makes me want to cover my face and cower down.
And that's pretty much where we're at with Sam at this moment.
I don't usually like to post when we're going through a rough run with Sam. I find that waiting for that moment to pass usually allows for a less emotional, more inner-reflective post...which can be quite therapeutic. And, another big plus, makes me sound less like a whingey not-coping-that-great mom.
But this moment just ain't passing...and I fear that if I wait, we'll next catch up round about Sam's 21st birthday! And my 56th birthday....Eeeeek! I just discovered a new fear...ageing! Nah...just kidding.
Sam experiences life at the moment cowering down, shielding himself from the world...which has become an unbearably frightening place for him, even more so than before. Sam has, and always has had, two different kinds of defensive reactions...an aversion to anxiety-triggering elements, eg. the puking at the sound of a hairdryer. And then completely debilitating fear, eg. when you lie him down on an unfamiliar surface (say to change his nappy) and he is so afraid that he can't even breathe. These two reactions have completely switched places and while sensory aversion occurred more frequently with moments of terror only happening very occasionally when circumstances of our surroundings were beyond our control...I now get commanded by Sam to blowdry my hair every morning! And cars induce the same reaction lying down used to!
Cars? Cars! *sigh*
As soon as Winter showed just the subtlest of signs of letting up, we pounced on the first opportunity to commence our usual insanity-preventing evening walks a couple of weeks ago. Suddenly with every car which drove passed us, Sam covered his face with his hands, turned his body around and tried to push his body as low down into the stroller as he could manage. And so it carried on the moment Sam noticed a car approaching. A few nights later, determined that at least Sam would get some exercise, we took him out front to walk an extremely short distance down the road, holding our hands. With us staying in a close, we expected there to be limited traffic...which there was. Suddenly Sam turned in panic, near climbing up my leg in his desperation to be picked up. Sure enough, a hundred metres or so in front of us, was a car....a stationary car. Which had been parked there since we began our stroll!
So...cars and walks are now out! It's so heartbreaking to see how full of fear Sam is without having the benefit of verbal communication to be able to soothe his worries and determine exactly what feeds these struggles. I used to pray each and every night that the Lord would lay His healing hands on Sam's brain, allowing him to master walking and speech. Recently I changed the nature of my prayer...I pray that the Holy Spirit will completely overflow within Sam...will quiet his many fears. Just days after my new petition, so intrigued with his obsession with numbers, Sam stood holding onto the kitchen counter on his own, completely absorbed by the scrolling numbers on the microwave seemingly unaware that I had removed my support from behind him. I have hope ♡
Tuesday, September 2, 2014
Friday, August 29, 2014
Riddle me this
Riddle me that.
Some days are peaked,
Some days are flat.
Riddle me here
Riddle me there,
This little dude's senses. A riddle, mystery and puzzle all on their own. Exhausting.
Over the past few weeks we're very very much back to throwing up all over the show again, not in the least bit reserved for unfamiliar places but seemingly more like at any place that's not home. We were visiting a friend recently who has an old-fashioned till in her school room. Sam was already anxious just about the outing in general. Meg was messing around by the till and pressed the little button to print a till slip but there being no paper in it, it simply made a funny sound. You can probably imagine what kind of sound - not particularly sensory disturbing, well not for us anyway but definitely distressing enough for Sam to throw up.
Again we're back to a fearful, plank-like extension when I try and get Sam to walk holding my one hand or using his walker yet a few weeks ago he walked all the way from the car into the physio rooms holding just my one hand??? And here's the doozey...completely fed up with walking around with soaking wet, long hair in the middle of winter thanks to not being able to use a vomit-triggering hairdryer I decided to give my hair the chop about 2 weeks ago. Still getting used to how quickly my hair now dries, after my shower this morning I hurriedly went about getting Sam ready for his physio session and happened to catch my reflection out of the corner of my eye as I rushed about. I looked like I had run headfirst into a Van de Graaff generator!
Tuesday, August 5, 2014
...right now, on the spot...without a moment to compile a 'correct' answer...what are the five essential things all parents should teach their kids, what would you say?
To be honest? Respectful? Considerate? To love their neighbour? Humility? Generosity?...and a few other wonderful values I'm sure. Why then is there still such a struggle for respect and acceptance amongst differently-abled children and their parents? If you know the answer, please do enlighten...seriously.
No child is born with preconceived prejudices, we instil it within them through our own behaviour and the environment in which we raise our children. Let me put this to you...say you're spending the afternoon with your kiddo at the park. You approach the playground and there are two kids (roughly the same age) already playing but on apposite sides of the play area...one 'normal', the other with noticeable differences. Your kiddo is just so keen for a playmate he/she is open to either child. Be brutally honest now and ask yourself - towards which one of those children would you guide your child? And why?
No parent/s of a child/children with different or compromised abilities wants sympathy or pity. Well hopefully not...otherwise they might require a swift foot to the patoottie. In fact, they want little of anything for themselves...but for their kids they desire the world...you know...much like you do for your 'normal' kids. A world in which their children are accepted as valuable members of society, treated with respect and consideration and allowed to share in that wonderful phenomenon we call belonging.
You know why it's so heartbreaking to hear of regular occurences within our worldwide special needs community where children have been victimised, discriminated against and generally treated badly? Because we watch them struggle through challenges which are ten times, twenty times...heck, sometimes a hundred times more difficult to confront than typical kids. And then we have to watch them struggle through things which should not require any special effort at all.
Being accepted, respected and treated as a human being should be a given. It should *not* be a privilege bestowed only upon those who communicate like us, move like us, play like us and generally experience life as we do. Yet a privilege it appears to be.
Below is an excerpt from an article on everydayfamily.com. I can't say I'm loving the use of the word "tolerate". It seems better suited for other situations, eg. I'll tolerate a little chocolate mousse for pudding if I absolutely have to! Okay no, that's not a great example. How about - I'll tolerate a little One Direction in the car if I have to...for like two minutes max at a time...every other day...with the volume on 1.
Regardless of my word preferences the message, however, being communicated through the article is really quite relevant and hopefully extremely thought-provoking.
"How are you different? How is your child different? Learning to recognize common ground can be uniting, but learning to recognize and accept differences can be just as endearing. Tolerance is not just a buzzword exploited by the media in today’s society, but is a core social value of America. America has been labeled “the great melting pot,” because of its tendency to bring people of all races, religions, and ideals into one place. It is a place of diversity, and therefore a place for tolerance.
Marie Curie said, “Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.”
Tolerance is the key to increasing understanding and decreasing fear in our next generation, our children. Tolerance is acceptance, openness, and respect for differences.
But how do parents promote this healthy appreciation and respect for these differences that make us so great? Children, at very young ages, are often exceptionally aware and honest about differences they observe between themselves and others, but rarely attach judgments to those candid observations.
We adults are the ones that do that!
You may have heard a parent in the grocery store shushing their three-year-old who says, “Mommy, that man is very big!” or “Daddy, that girl has pink hair!” These observations are often expressed in form of a question like, “Why does that man have such dark skin?” “Why does that lady wear that long robe?” “Why is that boy in a wheel chair?” These are perfect opportunities to teach the core social value of tolerance. What we do and say in these crucial moments can help to mend wounds and bridge chasms between different people that have been incurable in the past.
Being willing to put off the awkwardness and to talk openly and honestly with our children about their questions is just the tip of the iceberg of how we can teach them tolerance and acceptance :
6 WAYS PARENTS CAN FOSTER TOLERANCE:
Teach them love first. Be an example of loving others despite and because of their differences. Seek to help others, even if they are different than you.
Know your own values and biases.No one is without biases or values of their own. It is important to evaluate our own personal beliefs, values, and differences we struggle to tolerate. Seek to understand those things more completely.
Expose children to differences. Teach them they don’t have to agree to respect others.The best way to increase understanding is to jump in. Libraries and bookstores can take a parent and child all over the world and back to their home in an afternoon. It’s important to allow our children to explore the world and all its varieties of people, cultures, and views. This can allow a child to see your appreciation and respect for others while still allowing you to express your own views, values, and culture. It is important to note that it is not necessary to agree with or adopt all the differences we come to understand, but that we can always respect others for holding those values.
Challenge stereotypes.We do not live in a perfectly tolerant world, and there are many stereotypes and prejudices that are held and perpetuated in media, as well as in our interactions with others. It is important not to participate in jokes or other practices that foster stereotypes and degrade others. If we encounter such intolerance, parents can assertively tell their children, “That’s not true. Why don’t we learn a little more about that to better understand what is true.”
Challenge yourself. It’s easy to see things through our own personal lens. When others challenge our views or culture, it is easy to become defensive, which shuts us off to learning. It’s important to challenge personal defensiveness, and seek to see others’ point of view. Ask questions and listen before responding. Try to see things from the other person’s point of view. When children see this, they adopt this quality themselves.
Foster your child’s self-esteem.When children feel good about themselves, they don’t feel threatened by the differences of others. Children who are secure about themselves are more comfortable exploring and debating opposing views."
Saturday, August 2, 2014
...that the Lil Smurfy Dude has spent approximately 1800 days on this Earth and that, on average, he threw up every fourth day. That's a good average because sure there have been stretches when he would go weeks without vomiting but there have also been stretches when he would vomit two...three...sometimes four or more times every day, so it's certainly a good average. That would put us at about 450 throws up over 5 years and allocating a generous 150 throw ups to alternate landing spots, it would be fair to declare that I have been drenched in a healthy dose of eau de puke at least 300 times over the last 5 years. Three.Hundred.Times!!! Now if you are sitting (on a Saturday night of all nights) considering calculations of this nature, you know you have been puked on one (or 299) too many times.
So 300 would have to be some kind of record right? Definitely worthy of a mention in the Guinness Book of World Records? A quick chat with my pal Google advises otherwise. There was a young gent considering an attempt at being
The best at throwing up but with his regurgitation being voluntary I hardly think it's a fair comparison. An interesting article on
How to vomit without making a mess did come up...I'm going to share it with Sam...will let you know how it works out.
Now who would have expected to learn such fascinating facts on such a boring mommy blog?
Another fascinating fact...the only thing I hate more than Sam vomiting is Sam vomiting ON ME! And last Sunday's incident has so far been the most spectacular. Sam's most recent sensory overload is caused by too many people standing up suddenly around him. It happened the previous Sunday at the end of the service when I took a little longer to perch his 18kg self on my hip. Luckily quickly running out stopped the gagging just in time. Last Sunday, however, Chris and one or two other gents stood up to collect the tithes instantly causing Sam to gag. It being the beginning of the service I thought I would give it an opportunity to pass before rushing out. Not the wisest decision. After the 3rd gag I knew we were in trouble and got up to leave but it was too late...a moment later partially digested Pediasure and Futurelife exploded into my face and hair. Luckily the ground was mostly spared as the excess of the explosion was beautifully captured in the loose folds of the polo neck I was wearing.
Tomorrow we shall go accessorised with at least one marg tub and with any luck will not spend the entire service in the car.
Thursday, July 24, 2014
I saw this link flying by my FB newsfeed a coupla days ago Five Things A Special Needs Mom Won't Tell You and thought Oh no! Not another thousand page handbook on how to 'handle' the parent of a child with different abilities...you know, like don't blink when engaging in conversation because it could be misconstrued as blinding pity for the mother and/or child...don't lick your lips when talking as it's a derogatory action implying you think children with different abilities are lesser human beings...and all those other not-so-helpful articles which prevent, through creating a distorted idea that engaging in any interaction with the parent/s of a kiddo with DA's is bound to be super high maintenance, the one common desire we all ache for...to just be treated like N.O.R.M.A.L.
Bleh. Normal. But there I said it.
I'm still sort of contemplating the term 'special needs mom'. A couple of years ago I never would've considered myself one of the more politically correct types on this journey...hearing people use the r-word sure irked me, but not enough that I would grab the nearest piece of cardboard and go start a protest. Now? I really could kinda see myself doing just that. In all fairness, I have used the term special needs mom/parent myself but mostly because it's probably the most 'recognised' term socially. I've experienced a few 'huh?' moments when referring to Sam as differently-abled as opposed to disabled. You can't land smack bang in the middle of England and instantly expect everyone there to communicate fluently in Afrikaans without having had any prior exposure to it, right? But a little enlightenment here and there will soon bring us all onto the same page.
So...special needs mom, hey?...certainly there are a few needs I have which might not fit 100% into the usual 'needs' box...being able to take my morning shower in a closed shower (especially now in winter...bbbrrrrrr) without rushing to beat my allocated three repeats of the balloon song (all the while keeping an eye on Sam) before he gets agitated...the need to not have to carry empty margarine/yoghurt tubs around with me...the need to successfully find accessories and equipment which can still accommodate a five year old who has not yet mastered certain skills generally acquired much younger (like potty training)...but I am not sure these needs could be considered special.
Could it be that the 'special needs' refers to the child? Hmmmm. An interesting concept and really quite possible. But still, does Sam have special needs? Or does he have the same needs as Meghan but just requires more thereof...more patience...more guidance...more care with his health...more creativity with his learning. Special implies extraordinary...being bathed in honey...carried around in style like an Egyption emperor...fed chocolate truffles at hourly intervals...all of which I can see Sam tolerating quite well. But if not special then what - Five Things More Needs Moms Won't Tell You? Doesn't quite have the same effect, does it?
I suspect a little further contemplation is required.
And what, you might ask, does any of this random gabbering have to do with the article. Absolutely nothing. It's not a bad article, go ahead and give it a read. The End xxx
Wednesday, July 23, 2014
Have I mentioned that the little dude now weighs 18kg's? That's the average weight of a 'normal' five year old kid. So the slow weight gain associated with RTS has been conquered...awesome! Well...um...mostly awesome. Just the 153cm's of mom carrying those 18kg's of awesomeness around is taking a little strain. And while most of Sam's body grows sturdy and strong, those little lower legs seem to be fading just as quickly. So walk the smurfy lil dude must.
Sam is having to re-master his walker. When he first got it, he used it the wrong way round as his fears and anxieties kicked into overdrive when encountering life so far off the ground, without any form of protective shield in front of him. To start with I was just so thrilled to have him straying from his knee-walking at least a little that I didn't consider the repercussions. But seeing that Sam was adopting more of a 'pushing' stance made me realise that he was in no way strengthening his core muscles which he needs to do if walking unassisted is ever going to be an option and also, he was in actual fact being given a false sense of security...much as a baby's walking ring would. No wasted moments though, he simply would just not have used the walker at all otherwise. Baby steps, see :)
Having grown more confident using the walker correctly around the house and at therapies, I decided it was time to hit the big, bad world! Off we went to our local Spar, the same place we tried out the 'incorrect' method. Determined to avoid all things 'normal' the first place Sam heads is....the fruit and vegetables aisle! He has a fascination with, mostly, bananas and pineapples and it is very seldom we leave a store without bananas so if ever you run out, you know where to go.
It would be fair to say that using the walker this way, which makes his dragging right foot a little more pronounced, certainly makes for an awkward-looking gait but hey, my general all round clumsiness and tendency to trip over non-existent obstacles makes me look a little awkward too. His smurfy swagger usually brings a smile from others, occasionally a pretending-not-to-stare stare and sometimes...a little more often than it should...a very purposeful look of disapproval.
Disapproval? Why so?
Because I have dared to expose our 'tragedy' to those who know nought of such things, who resent you for imprinting even just briefly upon their minds the fact that such 'imperfections' even exist.
Sound like an oversensitive mommy rant to you? Tis not! And here's why I know...as the deliverer of this disapproving look squeezed passed our awkwardness, my 13yr old daughter...usually preoccupied with watching herself doing various renditions of 50 Epic Dance Moves in the shop windows or reassuring me that she would not have jayboarded straight into that oncoming car had I not literally grabbed her by the collar...paused mid-Meghaness to note how Sam and I were both being scowled at. Like, wow, really???
Now it's fairly easy to understand why, although I see plenty fellow-journeying moms at therapies or out in force at get-togethers, I very seldom run into them in random places. It's really quite sad, don't you think? Iris House Children's Hospice gifted us all with these wonderful little 'ice breaker' cards for our kiddies...I'm going to ask them to add to Sam's, in big bold print, NOT FOR SENSITIVE VIEWERS!
Nah...just kidding :D
Thankfully, our little 'really?' moment is completely overshadowed by more heartwarming incidents like when a friend, at the same store, has already packed herself, her family and her parcels into her car and is about to drive away when she spots your smurfy entourage across the parking lot and leaps out to hurry over and say hallo!!! A small happening to some, a meaningful heartfelt gesture to others xxx
Saturday, July 19, 2014
Thursday, July 3, 2014
Today, all around the world, hundreds of families are celebrating challenges overcome, journeys embraced and the incredible bond which exists between us, all brought into being through a shared diagnosis of Rubinstein-Taybi Syndrome. A common sentiment rings loud across many...Rubinstein-Taybi Syndrome (or any other condition for that matter) does not define who our children are.
I do still feel quite strongly about a particular element of our World RTS Day. RAISING AWARENESS. And here's why...
Sam was delivered through an emergency c-section, two months prem, in severe distress. There was no cuddling on the delivery table, no pics snapped through happy tears by dad. In it's place a blue, lifeless body... barely 3 apples high... (aaahhh...smurf?) was whisked briefly over me to an awaiting incubator amidst mutterings of "abnormal" and equally devastating words.
Before I'd even had the chance to meet my little smurf, the paediatrician delivered the diagnosis. Rubinstein-Taybi Syndrome.
Sam will never walk. Sam will never talk. A high risk of cancer can be expected, as can an average IQ of 30. A feeding tube was on the table as too was a look into a 'home'. No cruel intent on the part of the paediatrician, he was sharing what he knew of RTS...which, having never heard of it before, was precious little. Hours later I made my way to the NICU filled with mind-numbing fear of what RTS was going to look like, feel like. But lying in that incubator, attached to an oscillator and way too many other tubes and needles, was a now purpley-blue little form...still barely 3 apples high with an oversized white hat. For me the diagnosis and subsequent prognosis fell into a deep, black hole to be revisited some other time...there was just too much loving and bonding and nurturing happening to care.
But what if I wasn't me?
Considered a high-risk pregnancy because of my age, my gynae asked early on into my pregnancy of I would be opting for an amnio. My answer was no, regardless of the result of any test termination would never be an option for me. Not at all a judgement, merely a fact. But what if I was perhaps a very young woman, unmarried, at the start of a promising career or even without any hope of financial comfort and not particularly swaying to either abortion or pro-life with any substantial conviction. What if, early enough into my pregnancy, RTS was suspected and I was delivered the exact same information? My choice, sadly inadequately informed, might well lead me to a decision which deprives the world of one more RTS sweetie.
Raising awareness of Rubinstein-Taybi Syndrome, and other rare and unknown conditions, is vital. It will ultimately lead to doctors who are better equipped to prepare parents for the journey ahead by immediately creating a trusting affirmation that he/she knows what they're talking about and not merely rushing frantically to the nearest search engine to consume the exact same medical entries we as parents can. Sharing details or posts of fellow RTS families could help diagnose those who through lack of limited resources have slipped through the system. A perfect example for our avid Mr Tumble fans - little Lauren! Family and friends instantly recognise her as a sweetie with RTS. Had they not known Sam, she might not have stood out from all the other crazy-adorable kids in those videos. I never miss out on an opportunity to educate, waiting eagerly for the slightest indication in any interaction with a stranger to do so...sometimes they have me at 'hallo'!
So what if our young, unmarried mother with the fabulous career and life awaiting her was told the following instead:
Your child might not walk...unassisted. But will move around like a pro with the assistance of a walker, however most children with RTS do actually walk unassisted and even participate in sports like soccer and baseball and so much more.
Your child might not talk...the same way you do. However they are more than adequately able to express themselves through sign language and AAC's, sometimes with delightful quirks of good humour.
An average IQ cannot be predetermined as all folks with RTS, while sharing many similar traits, are also unique in their development and abilities. However knowing all the numbers up to twenty by the age of 2 can be expected, as too can colours, shapes and the alphabet by age 4 and 50+ hand signs.
Your child might be prone to tumours and cancer due to the gene which is effected, being the gene which produces the body's binding protein and is responsible for suppressing tumors. But with the ever-increasing number of people falling prey to cancer, can any one person be excluded from this possibility.
In addition to the above, your child might have to face many medical challenges like seizures, a tethered spinal cord, immune issues, feeding issues, reflux and a few more. But a home filled with humming, twinning, happy-flapping, joy, admiration, determination and unconditional love is most definitely on the table.
Creates a different picture, doesn't it? Education, information, raising awareness. Vital.
If you had to ask this awesome bundle of smurfiness if, even for just one second, he'd ever felt his life was not worth living- what do you think he'd say?
Thursday, June 26, 2014
There is a song...about balloons... and colours...on Youtube. It is called... wait for it..."The Balloon Song (for learning colours)". Go have a listen. I did try download the link so I could share this delightful song with all of you but it automatically starts playing this song of delight and as the lil dude is lying sleeping next to me I can think of nothing more irritating right now than having him wake-up and demand to hear The Balloon Song.
And demand he will because Sam listens to The Balloon Song on average (and no,
this is no exaggeration) about 50 times. Each and every day. And while I don't deny the role The Balloon Song has had in Sam learning his colours, it does not take away from the fact that it is the most stuck-in-your-brain-like-no-other-song-in-the-history-of-all-songs kinda song. And yes, at random intervals throughout the day we will all find ourselves, to our horror, singing The Balloon Song.
And yet still, none of us have quite memorised the correct pattern of the song as Sam has. On Thursday evening Sam and I were enjoying our usual bathtime singalong and started on our first rendition of TBS. I sang 'red balloon', Sam signed 'red balloon'. I sang 'blue balloon', Sam signed 'blue balloon'. I sang 'green balloon', Sam signed 'white balloon'???
Uh no Sam... it's green after white. Started over but the same thing happened. And again. Eventually I asked Meg to bring me the iPad so I could help Sam right. The song started (feel free to sing along folks)
'Red red balloon, floating in the sky.
Blue blue balloon, floating up so high.
(See? The lyrics are riveting!)
White white balloon.....'
Say what? What happened to green? Oh pish posh. Green? White? What's the big diff anyway? Lol!
Only after did I think about the dangerous can of worms I might have opened by bringing the iPad into the bathroom but thankfully there was no request of this kind from Sam the following night. And nevermind twinning (a fascinating quirk RTS peeps have which requires that they be, for instance, watching the same movie on their iPad and the tele at the same time) Sam has now acquired Tripling... with TBS on tv, on his iPad and homemade balloon flashcards for that extra tactile effect!
Thursday, June 19, 2014
...we received the official report from the neuro-paed this morning. Sam's newly adjusted diagnosis now reads Rubinstein-Taybi Syndrome, Cerebral Palsy and secondary Autism.
I knew it was coming. I attended a lecture a couple of months ago given by JP Maes on the Maes concept for physiotherapy in kids with CP or similar neurological disorders. I was tagging along as the very minor contribution to the "similar neurological disorders" group. Within minutes into the lecture both the information being shared by JP as well as the little boy being focused on in the documentary, had me sitting up straight. There were just too many similarities between this little boy and Sam at that age. That, the information I Googled on periventricular leucomalacia and Dr neuro-paed's comments during last week's examination on lesions caused by brain bleeds in utero, abnormal reflexes, etc had me comment to Chris on the way home already that she was thinking CP.
The report also advised that Sam was aggressive and seemingly frustrated...and that he certainly has been for the last 2-3 weeks. So much so that we had to make like a hermit for pretty much most of that time. And yesterday we found out why at Sam's dentist appointment. He has three teeth which have decayed all the way down to the nerve and, according to the dentist, he must be in severe pain.
Aaaahhh...the joy of verbal limitations.
About two years ago Sam chipped his front tooth on some sushi (plastic Nemo in the bathtub). It was noticeable but not too problematic. A few months later the tooth was further chipped during an intubation. Over the passed few months Sam has progressively ground that tooth right down to the gum with his bottom tooth and about a week ago it started turning brown. Hence the dentist appointment which, thankfully, lead us to the two 'brown' molars at the back which haven't even properly broken through yet. So on the 2nd July we'll be doing our second and hopefully last anaesthetic for the year. A bit of a wait and not so wonderful theatre time at 11:30am, but what can you do *shrug
Sam's current infatuations are carousels and flags. (Thanks Mr Tumbles) The flags are an easy enough hit, a short drive just through town usually has Sam exclaiming in excitement. Carousels? Little bit of a more challenging find they are. Luckily there is a small 3-horse carousel in the same centre as the dentist. Walking passed it was an absolute squeal (literally) for Sam on Monday, which was a public holiday and ensured that the carousel was constantly being ridden by other kids, to Sam's delight. As with most of Sam's infatuations, he prefers viewing them from a distance and shudders in fear if you get too close.
Sam was so well-behaved at his dentist appointment yesterday and allowed a thorough examination of his teeth, albeit through some harsh sounding but luckily unproductive gagging. Seeing as he'd frantically started signing carousel the moment we entered the parking lot, I promised him a stroll plastit after our appointment. What a bummer! Mid-week morning meant no carousel-riding kiddies for Sam to watch :(
My makeshift homemade 'safer' Sam-friendly variation on a flag...he seems happy enough!
Tuesday, June 17, 2014
Thursday, June 12, 2014
...just had a call from NNP who, after our consultation on Tues, thought it best to go over Sam's brain scan images with a radiologist.
She confirmed the presence of the periventricular leucomalacia, advised that the previous radiologist had mistakenly advised us that Sam's Corpus Callosum is in tact as, on the contrary, a third of it is absent...and kindly referred me to someone who could help both me and Sam with coping mechanisms for Autism.
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