Sam. Conqueror. Overcomer.

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

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

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

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

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

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

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

(Nicky de Beer : 27/05/2010)

Monday, December 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

Thursday, July 2, 2015

People = Happiness

Hey...happy second day of the second half of 2015! Didn't know that was a celebrated event, did you? Nope, me was originally drafted as "Happy LAST day of the first half of 2015"...then it became "Happy FIRST day of the second half of's hoping I don't have to resort to "Hey, happy THIRD day of the second half of 2015!
Well, it's been a pretty eventful ending to the last half of the year, I can tell you. Kate and Lianie, the Chairperson and Social Director respectively of the Daniel and Friends Fund, invited me out to dinner on Tuesday, 9th June. I was ever-so-slightly curious about their motives and conjured up a host of impressively colourful possibilities, none of which came anywhere close to the actual reason which ask me to join the Daniel and Friends Fund team as Marketing Director. Well, you could've slapped me upside the head with a piece of raw pork...or maybe salmon? Yip, lets go with salmon...I do like, you could've slapped me upside the head with a piece of (preferably smoked) salmon and I would not have been more blindsided by surprise.
And it was a matter of hitting the ground running with our very first, official meeting just a couple of days later at a local bistro. In case you were wondering, the 'our' there refers to myself and young Sam who had to tag along. Was I stressed? Um, yup. Sam and restaurants is never a fabulous combination, so Sam + restaurant + needing to pay a decent amount of attention was pretty daunting but nevertheless, off we went and 2½ hours later we were headed home again without a trace of a meltdown or the vomit that usually accompanies it. Whoop whoop!

A few days later Sam attended his friend, Theo's, birthday party and again surprised us with being uncharacteristically calm and even had a bit of go on the jumping castle...well, on part of the jumping castle at least :D 
With this new and refreshing outlook on social activities, I found myself actually looking forward to our next outing, which was a get-together the following Saturday to meet some new moms who were keen to join our Daniel and Friends Fund Family. The whole experience felt a little surreal to be honest...could getting excited about socialising and being able to plan outfits instead of vomit-friendly venues have become our normal again? I was too petrified of jinxing the moment by even entertaining the notion but can assure you I sure hoped so because, surprisingly enough, vomit-friendly venues and activities are not floating around in abundance. Too quickly though, I became blasé about this "new" Sam and when Bramps offered to sit with Sam the following Tuesday when I told him we had a meeting with the Auditor, I ever-so-arrogantly informed him that Sam would be FINE! Less than an hour later, Sam was anything but fine...sharing an enthusiastic screech and protest session with everyone within a 5km radius of the auditor's office, not excluding us lucky few who had front row seats.
Has it blown my confidence at persevering with having Sam with me at future gatherings? I think I'm about to shock myself with my own revelation...NO! Not at's why - because when Sam went into meltdown mode that Tuesday, no-one judged, no-one seemed to think any less of either Sam or even flinched, not a beat was skipped...not even by the poor auditor-guy who's first encounter it was with Sam. I've heard a lot of moms with special needs kids, particularly those with sensory-related/autistic challenges, share with despair that one of the things which hurts them the most is that when strangers/ill-informed people witness a child having a meltdown, it is more often that not presumed to be due to bad parenting. Of course that would bother me, but it's never my first first concern always is that they will think poorly of Sam, only witnessing those few short moments of how he reacts to anxiety but not the very many more moments when he can be oh-so charming, super smart and, yes, even a very tender and loving little boy. I really do struggle with the fear of having Sam's spirit...the essence of who the little dude really is...obscured by the superficial reactions he succumbs to due to challenges related to his diagnoses...and this fear in turn initiates an anxiety in me of making him vulnerable to such by exposing him to circumstances which stress him out and then cause these reactions.  
Okay simply put...I want the people I like to like Sam. I want the people I like to spend time with to like spending time with Sam, even though he has an occasional ear-shattering, nerve-assaulting meltdown. And the key then, for me, to being able to still enjoy socialising and having strong, supportive friendships is thus...spending time with people who understand, who empathise but don't pity, who encourage without patronising, who accept without condition...who get me and my babe, you know, my people. Oh my word...there you have it! The conclusion, finally...
But before we can go jumping headfirst into a metre-long schedule of events though, we first need to rid Smurfville of the nasty bug which has Socialite Smurf floored :(
A four-hour long nap yesterday afternoon (about his third nap for the day) actually had me a little panicky as I struggled to wake the little dude up. Eventually I decided to give him a nice Epsom salt and destress crystal-filled bath, which is a surefire way to hype Sam up. Seriously. And just minutes later our promisingly vomit-free day was shattered by a double top-and-bottom explosion. Today has been not much different, even though we're almost on the 36th hour of this particular 24-hour bug and Sam is well into the second hour of a nap. This time though I'll just make the most of the gap to blog!
Aaaaaaand talking about of the things entrusted to my care as part of the Daniel and Friends Fund team is blogging for them. Oh yeah!!!! Gosh, you cannot imagine how excited I am! One of my biggest struggles with Sam's blog, apart from the obvious lack of opportunity to update more regularly, is trying to keep my topics Sam-related. I don't always succeed there, do I? Pffft! In all fairness, you'd have to be in my head to understand the chaotic hoard of stories and thoughts gathered there, desperately seeking an out...
A split-second glimpse!
Seriously, at any given time I have at least three different books saved on my pc, all in various stages of being being blessed with another outlet through which to perhaps share some of these captive sentiments is pretty darn amazing. 
Please do pop over and visit our Daniel and Friends Fund Blog - I do promise to at least make an attempt at remaining focused on the point at hand xxx

Friday, June 12, 2015

Shared paths - Here's to you, my friends!

About a week ago, as notifications from our Daniel and Friends Fund Whatsapp Support Group assaulted our phones at what seemed like a message per second with topics ranging from cupcakes, to unicorns, to wine, to flooded houses, to unicorns, to family, to wine, to unicorns, to beautifully hand-made bags, to our children, to unicorns...and so on and so on, I sat back for a moment as a thought hit me...I have had more friends, more social interaction, more laughs, more inspiration, more feeling accepted in the last year than what I've probably had at any other time in my life.
But that's not how it's supposed to be when you have a child with special needs, is it? You're supposed to be broken, sad, withdrawn...ALONE!!! Well, for a long time that person would invade my life every now and again...would break down the wall I'd built with humour and a positive attitude to keep those very negative emotions away...and I'd have to begin all over again. So, what changed? Well, out of all those wall-breaking elements, just one thing thing which makes the world of difference to how we cope with the struggles of parenting children with special needs.
Please don't misunderstand, it's not like every family member and friend ditched us...changed their telephone numbers, moved house and the like, abandoning us and running for the hills. While there have been friends that have not made it along this path of ours, I in particular have been blessed enough to have the endless support of my family and a couple of friends who have not only stuck by my side, but who go the extra mile to show support and love.
That's not the "alone" I'm referring to. I'm talking about people who understand having to trade that new car for chronic meds, satellite tv for therapies, birthday parties for hospital visits, milestones for plain old get the idea. Suddenly the path you've shared with old friends splits. If the friendship is meant to survive, between the two of you'll build a make-shift path in the middle which lands up being more solid and reliable than either of the other two. But sometimes it's necessary to each go your own path so for a while we feel alone. And then, when we least expect it, we walk Smack. Bang. into others walking that very same path. There's healing in a journey shared. That's just the way it is.
I Googled "Why is support important in special needs parenting?" Loads of posts popped up with the practical reasons - sharing experiences with medical practitioners, providing information on tried-and-tested solutions, etc. I can't even remember most of the other things. But having friends who just get mention of it! Yes, all the other points have merit. But you may be super proactive in approaching intervention therapies, a Phd waiting to happen from sponging up as much information as possible, have a ten year plan in place for your kiddo's potential development, have great respite care, enough buckerooni's in the bank to pay for the medical care of ten children with special needs and yet, still, I dare say you are not being honest with yourself if you believe you can come out of this on the other side a whole person, without having had at least one person who has shared, firsthand, your hopes...your fears...your determination...your courage...your challenges.
Joining a support group purely for emotional reasons is not a "maybe" once you've attended to the really important stuff. It's a "have to" if you are wanting to tackle the really important stuff with a healthy mind and heart. Truth. xxx

Thursday, May 28, 2015

Mommy Malfunction

Can you believe our little dude turned SIX on the 15th of May? WOW! I have to say that I expected another bout of melancholy to do the rounds, as it did this time last year when we found out days before Sam's 5th birthday about the Cerebral Palsy, but thankfully not so much. Yay! We did, of course, keep it low-key and instead of splurging on a birthday party (which Sam would most likely not enjoy) and a handful of pressies, we all rather clubbed together to buy Sam a Woody doll. And he absolutely loved it! Especially the moving arms...the kid ain't that fussy at long as the arms move, the doll can be headless, legless, whatever! He's flexible like that ;-) 

The day after Sam's birthday we did our first ever parkrun with the 'FLINK STAPPERS'  (watch this space)! Sam tolerated the 5km's way better than I expected (which in essence means there was no vomit) so when a suggestion for a cup of coffee was thrown out there, we were like "Coooooool!" as if it's something we do all the time. But by the time we were en route to the coffee shop thoughts of "This cannot end well" had beaten the earlier "cooooool" to a pitiful pulp. The thought of having to catch puke in a public eatery can do that to the best of us. But what do you know - the little dude was as good as gold! Think he shouted out once or twice for whatever reason but, considering he was the only kid there (this should have been my "A-ha" moment) , it was hardly unbearable. 
The Flink Stappers!
The very next day, still riding on the previous morning's successful outing, we decided to have a bite to eat with my sis at a local FAMILY restaurant. Oh. My. Hat! Not the wisest decision I've ever made. We were immediately off to a shakey start from the get-go with Sam trying to knock placemats, etc off the table. Thinking a quick walk through the play area would provide adequate distraction, off Sam and I went. Minutes later 153cm's of frantic mother was seen fleeing the restaurant with a screeching, flapping dude in tow ("in tow" meaning awkwardly dangling from my hip area).
Aaaaand the week was downhill from there. With Risperdal being the evil anti-psychotic drug that it is (?)and, in my mind, the root of almost all of Sam's behaviour problems, I was desperate for our weaning-off process to reach its end. With Sam being on such a low dosage that there is not even a measurement for it on the Risperdal syringe and having been on his natural alternatives for almost a week, I decided not to fill the next repeat and so, that Wednesday evening, we went cold turkey...this time by choice. Choice? A funny thing that...and not 'ha ha' funny but funny like 'why do I always make the wrong one', if that can be seen as funny. 
Take the Tasmanian Devil, squish him into an Angry Bird t-shirt, together with Eeyore and that's pretty much the essence of the tormented little character we were dealing with.

If I had a Rand for every time I've said that in the last six years, I'd be hobknobbing with the Ruppert's. After six night's of Sam managing a maximum amount of sleep of around two hours (the rest of the night spent bashing himself violently from side-to-side) through uncontrollable tears and stifled sobs, I typed an e-mail to Prof Prof (a nearby paediatrician Sam saw very briefly last year when my injured ankle prevented me from driving) at 1:10am on the Tuesday morning, asking if I would be causing any harm by putting Sam back on the Risperdal! I only half expected a reply seeing as Prof Prof had not benefited from having Sam as a longterm patient (we had only seen him twice and the second visit, after hours of all things, he had not charged us for as I had mistakenly imagined seeing something in Sam's ear. #sigh ) but low-and-behold, at 1:34am my tablet lit up. A reply! With an instruction to give him a call in the morning. More sobbing...but this time full of thankfulness.

After a quick phone call the next morning to explain the situation and my reasoning for wanting to stop giving Sam the Risperdal (which had been my wanting to limit the amount of chemicals we are pumping into Sam's system on a daily basis, relying on natural remedies instead, especially as I had not seen a significant improvement in Sam's quality of life since starting Risperdal) Prof Prof a) refrained from berating me for opting for the natural remedies and instead reassured me that for peace of mind, it was good that I had at least given it a go and b) suggested that we immediately put Sam back on the Risperdal on the same dose he was previously on, but administered differently, ie. instead of a once daily dose, splitting the dose in two which should almost immediately settle my first complaint, that the Risperdal was not helping Sam during the day.  After a quick chat over the phone with our local pharmacist, I was advised that I could go collect Sam's Risperdal that very evening.

This week has been a complete contrast to last week. On Monday we headed off to our most dreaded chore, shopping.  There was probably a total of seven items on the list which would usually be carried out in a frantic 10-mintue whirlwind. This time Sam was so calm that Meg and I actually dragged our feet a little and I half-wished there was other things I needed to buy in order to take advantage of Sam's not-often-seen content being pushed around the shop.  Yesterday afternoon we had an appointment with Prof Prof, who was running a little late due to an emergency. After a half-hour wait Sam would normally have been climbing the walls...or painting them with something other than paint.  Although he did protest loudly whenever a baby cried, he was so unbelievably good and not once did he strike out when anyone came too close to him - this alone is a HUGE change! 

After sharing an impromptu slideshow presentation with me, as well as the benefits of using certain medication to help improve the quality of life for a child with Autism and reassuring me that I am not "frying" Sam's brain with the rather lengthy list of medications he takes daily, Prof Prof made probably one the most profound statements to me that anyone has done in a long while...

Many, if not most, of Sam's RTS peers have Autistic traits which often present in sensory challenges. However, I believe, their "main" diagnosis remains Rubinstein-Taybi Syndrome. Should you remove that funky little CREBP Gene from their genetic make-up, the chances are their Autistic traits and the sensory challenges related to it would quite likely disappear too. I shared a sentiment here quite some time ago though that, should we be in the glorious position to somehow completely remove both RTS and Cerebral Palsy from Sam's system...he would still be dealing with the exact same challenges he faces now on a daily basis....perhaps just without those funky little thumbs and the several scars he bravely wears reminding us of some of the more severe medical conditions related to RTS. 

In summing up our consultation yesterday afternoon, Prof Prof started with "So, we're dealing with Autism and Cerebral Palsy with underlying Rubinstein-Taybi"!  Oh my gosh! I almost started bawling right then and there. Someone gets it...someone sees passed the RTS and acknowledges and understands the significantly larger role Autism is playing in our lives. We left the hospital feeling more focused and 'together' than we have in a very, very long time. And I say "we" because somehow Sam seemed more peaceful too, firstly by eagerly signing "doctor" when I pulled the car into the garage and secondly by having such an incredibly good night's sleep last night that I had to keep putting my hand on him to make sure he was breathing!!!

And, to add yet some more positivity and hopefulness to this week, we got to have another SNAP Lite session with Aunty Annelies.  I still can't get over how mesmerised Sam is by her. When she's sitting on the floor working with him, Sam is almost unrecognisable.  She keeps him so focused and capable...the results she draws from him are amazing and not to mention what a wealth of information she is with all sort of wonderful "tricks", like using playdough to help train the brain to see and recognise outlines. 

A little more than a week ago, I sat with a guilt-ridden, near-hopeless heart...not knowing which way to turn and dealing with the anguish of possibly making my son's journey so much more difficult and impossible by constantly making wrong decisions. 
This week, as I write this, my heart wants to explode with hope and the reassurance of a way forward.
And now, please excuse me while I go find myself a crossbow, rifle...heck even a paintball gun will I can go hunt that schmuck, Murphy, down before he sees that as an invitation xxx 

Wednesday, May 13, 2015

Swing High, Swing Low...

....Sweet Chariot, coming 'for to carry me home!
Well, I don't know about having someone to carry me home (unless I count myself) but swinging high and low there's been a plenty, with a little bit of swinging upside down, sideways and all over the place...enough to land me a blue eye that might've had you thinking I'd been socking it up with Mayweather and Pacquiao. Guarantee it would've been a bit more of an entertaining fight at least #snaughle (Lame? Yes, I know)
So...swinging low. After gathering up a 2-3 year store of ailments, I found myself, about two weeks ago, having to make a doc appointment for myself. Mmmmm. A doc appointment where the lap and arms usually needed to comfort and/or catch vomit were going to be otherwise preoccupied?Nevertheless, off we went one rainy Thursday morning full of jittery energy. ("we" meaning me). Found a parking spot right in front of the entrance - yay! Shortlived celebration as the little dude started gagging the second I turned the car off.  Minutes into the consultation Sam started screeching and trying to buck himself out of his pushchair. After a rushed and chaotic examination and half-listened to diagnosis, I hightailed outta there, hitting the sidewalk just as Sam started projectile vomiting (Not so much a "Yay" for parking right at the entrance in full view of the waiting room, anymore). I kept a hand tapping on his chest (for some reason this sometimes seems to help) while stretching over to open the wet car door but just as I did that Sam started choking and as I turned round to check on him the door slipped out of my hand and wholloped me good and solid in the face. The blood dripping down my face told me I should be crying but really, it was all I could do to keep from plonking myself down on the ground, in the rain, and giving in to hysterical, uncontrollable laughter.
Somehow managed to transfer 20kg's of puking little dude into the car with one hand, while holding my eye with the other. Who knew a person's eyeball could move so flexibly? Did an awesome one-handed fold up of the stroller just as I noticed a beautifully-packaged young lady exiting what I'd thought was an empty, stationary car right across from us. Luckily she found us/me too pitiful a sight to even make eye contact as she walked passed and kept her eyes on the ground. Oh well.
Saturday morning we attended the birthday party of a beautiful little girl....more puke and striking out at the other kids shortly after we got there. Swinging low...again. Excused ourselves early, headed home for some quick puke-damage control and then off to our local Hypermarket, a-buzz with month end shoppers, expecting round 3 of swinging low for that week. Nope. The kid was as calm as could be...swinging high. It's really kind of frustrating not being able to identify specific triggers, which might make outings that little bit easier to manage. But he's constantly-changing triggers seem to have us roped into a warped type of Russian Roulette...just with puke instead of a bullet. *sigh
Last week Saturday was a day filled with some more swinging high, thankfully, when I managed an alarmingly disaster-free talk to a room full of Gatsby-clad women, for a Ladies Tea hosted by the Daniel and Friends Fund at the beautiful La Provence Stellenbosch. It was probably one of the most invigorating and motivating experiences I've had in some time (public speaking is not quite one of my forte's) made that much more exciting by the fact that the occasion was all to raise money for a fabulous cause, the Equine Therapy Project at Haven of Hope Equine Aid Centre, a project close to Daniel and Friends Fund's heart.
I am still busy reading up on as much information as possible regarding Anxiety Disorders, particularly in children with Autism. Most of the info is fairly obvious, but sometimes reading it in black and white, furnished by a third party, makes it grab you a little more. Knowing that I do struggle to contain my own anxieties sometimes (like the occasional, pre outing near-panic when I have to go out alone with Sam knowing it could well end in him having a meltdown and throwing up in a shop...again!) has really hit home with how it in turn feeds Sam's own, already very present anxieties. So we're working on it...and soaking up any bit of advice available...
How to Avoid Passing Anxiety on to Your Kids

On a recent afternoon, JD Bailey was trying to get her two young daughters to their dance class. A work assignment delayed her attempts to leave the house, and when Bailey was finally ready to go, she realized that her girls still didn't have their dance clothes on. She began to feel overwhelmed and frustrated, and in the car ride on the way to the class, she shouted at her daughters for not being ready on time. "Suddenly I was like, 'What am I doing?'" she recalls. "'This isn't their fault. This is me.' "
Bailey has dealt with anxiety for as long as she can remember, but it has become more acute since the birth of her second daughter, when she began to experience postpartum depression. She knows that her anxiety occasionally causes her to lash out at her daughters when she doesn't really mean to, and she can see that it affects them. "You see it in your kids' face," Bailey says. "Not that they're scared, but just the negativity: 'Oh my God, my mommy's upset.' You're their rock. They don't want to see you upset."
Taking cues from you
Witnessing a parent in a state of anxiety can be more than just momentarily unsettling for children. Kids look to their parents for information about how to interpret ambiguous situations; if a parent seems consistently anxious and fearful, the child will determine that a variety of scenarios are unsafe. And there is evidence that children of anxious parents are more likely to exhibit anxiety themselves, a probable combination of genetic risk factors and learned behaviours.
It can be painful to think that, despite your best intentions, you may find yourself transmitting your own stress to your child. But if you are dealing with anxiety and start to notice your child exhibiting anxious behaviors, the first important thing is not to get bogged down by guilt. "There's no need to punish yourself," says Dr. Jamie Howard, director of the Stress and Resilience Program at the Child Mind Institute. "It feels really bad to have anxiety, and it's not easy to turn off."

 But the transmission of anxiety from parent to child is not inevitable. The second important thing to do is implement strategies to help ensure that you do not pass your anxiety on to your kids. That means managing your own stress as effectively as possible, and helping your kids manage theirs. "If a child is prone to anxiety," Dr. Howard adds, "it's helpful to know it sooner and to learn the strategies to manage sooner."
What to Do (and Not Do) When Children Are Anxious
It's tempting to protect kids from things that make them anxious, but learning to tolerate anxiety is how we overcome fears.  

 Learn stress management techniques
It can be very difficult to communicate a sense of calm to your child when you are struggling to cope with your own anxiety. A mental health professional can help you work through methods of stress management that will suit your specific needs. As you learn to tolerate stress, you will in turn be teaching your child—who takes cues from your behavior—how to cope with situations of uncertainty or doubt.
"A big part of treatment for children with anxiety," explains Laura Kirmayer, an associate psychologist at the Child Mind Institute, "is actually teaching parents stress tolerance, It's a simultaneous process—it's both directing the parent's anxiety, and then how they also support and scaffold the child's development of stress tolerance."
Model stress tolerance
You might find yourself learning strategies in therapy that you can then impart to your child when she is feeling anxious. If, for example, you are working on thinking rationally during times of stress, you can practice those same skills with your child. Say to her: "I understand that you are scared, but what are the chances something scary is actually going to happen?"
Try to maintain a calm, neutral demeanour in front of your child, even as you are working on managing your anxiety.
Dr. Howard says, "Be aware of your facial expressions, the words you choose, and the intensity of the emotion you express, because kids are reading you. They're little sponges and they pick up on everything."
Explain your anxiety
While you don't want your child to witness every anxious moment you experience, you do not have to constantly suppress your emotions. It's okay—and even healthy—for children to see their parents cope with stress every now and then, but you want to explain why you reacted in the way that you did.  Let's say, for example, you lost your temper because you were worried about getting your child to school on time. Later, when things are calm, say to her: "Do you remember when I got really frustrated in the morning? I was feeling anxious because you were late for school, and the way I managed my anxiety was by yelling. But there are other ways you can manage it too. Maybe we can come up with a better way of leaving the house each morning."
Talking about anxiety in this way gives children permission to feel stress, explains Kirmayer, and sends the message that stress is manageable. "If we feel like we have to constantly protect our children from seeing us sad, or angry, or anxious, we're subtly giving our children the message that they don't have permission to feel those feelings, or express them, or manage them," she adds. "Then we're also, in a way, giving them an indication that there isn't a way to manage them when they happen."

After JD Bailey lost her temper at her daughters on their way to dance class, she made sure to explain her reaction, and then focused on moving forward. "I said, 'I'm sorry. Mom is a little stressed out because I have a lot of work going on. Let's listen to some music,' " Bailey recalls. "We cranked up the music in the car, and it changed our mood."
Make a plan:
Come up with strategies in advance for managing specific situations that trigger your stress. You may even involve your child in the plan. If, for example, you find yourself feeling anxious about getting your son ready for bed by a reasonable hour, talk to him about how you can work together to better handle this stressful transition in the future. Maybe you can come up with a plan wherein he earns points toward a privilege whenever he goes through his evening routine without protesting his bedtime.
These strategies should be used sparingly: You don't want to put the responsibility on your child to manage your anxiety if it permeates many aspects of your life. But seeing you implement a plan to curb specific anxious moments lets him know that stress can be tolerated and managed.
Know when to disengage:
If you know that a situation causes you undue stress, you might want to plan ahead to absent yourself from that situation so your children will not interpret it as unsafe. Let's say, for example, that school drop-offs fill you with separation anxiety. Eventually you want to be able to take your child to school, but if you are still in treatment, you can ask a co-parent or co-adult to handle the drop off. "You don't want to model this very worried, concerned expression upon separating from your children," says Dr. Howard. "You don't want them to think that there's anything dangerous about dropping them off at school."
In general, if you feel yourself becoming overwhelmed with anxiety in the presence of your child, try to take a break. Danielle Veith, a stay-at-home mom who blogs about her struggles with anxiety, will take some time to herself and engage in stress-relieving activities when she starts to feel acutely anxious. "I have a list of to-do-right-this-second tips for dealing with a panic, which I carry with me: take a walk, drink tea, take a bath, or just get out the door into the air," she says. "For me, it's about trusting in the fact that the anxiety will pass and just getting through until it passes."
Find a support system:
Trying to parent while struggling with your own mental health can be a challenge, but you don't have to do it alone. Rely on the people in your life who will step in when you feel overwhelmed, or even just offer words of support. Those people can be therapists, co-parents, or friends. "I am a part of an actual support group, but I also have a network of friends," says Veith. "I am open with friends about who I am, because I need to be able to call on them and ask for help. "


Of course, not all of this points are practical suggestions when dealing with Sam...I think only the first three tips might be relevant, but still a helpful article nonetheless!

Tuesday, April 28, 2015

Fight-Flight 101

An interesting bit of info I read recently is that Risperdal can heighten anxiety issues. Very interesting. Especially as I sit here on a daily, sometimes hourly, basis trying to figure out where all these extra anxieties have come from. Now it's no secret that I am not Risperdal's No.1 fan, almost instantly Sam became over-emotional and insatiably hungry. But I figured a little sporadic sobbing and healthy appetite was a small price to pay if there was noticeable improvement in other areas, like sleeping and social behaviour. The thing is, there's been no noticeable improvement in those areas so at this stage the negatives are outweighing the positives. I am still cautious about taking Sam off the Risperdal though, so have opted for the most conservative weaning process which is decreasing his dose by 10% every 3-4 weeks which effectively means that Sam will only be Risperdal-free at the end of June. 

Trying to figure a way forward with Sam's social development has made me realise that we do not give Sam's anxiety issues enough credit for the role they play in his social interaction. Sam comes from at least two generations of severe anxiety sufferers (a story for another day but, yes, genetics do play a role in anxiety disorders), compounded by an under-developed nervous system from being born prem and needing the many medical procedures his special needs required with only this under-developed sensory base to comfort and stabilise him. I am an adult with a fully-functioning cognitive system (well most of the time) from which to draw the rationale which would help me process all the 'trauma' in my life, like surgeries, etc and yet still I can quite comfortably say that I'd be close to a nervous wreck having dealt with some of the challenges Sam has. 


Fear is a normal part of childhood. But for many kids with special needs–kids who’ve experienced scary medical procedures, separation from their parents, constant pain, and other situations they shouldn’t have to endure–anxiety can become debilitating or lead to post-traumatic stress disorder (PTSD). When it does, parents and other caring adults need to step in and help them find treatment.

5 Symptoms of Anxiety in Kids

But how can we know when ordinary childhood fear has morphed into debilitating anxiety? A post at Lending Hand Resources lists the following 5 symptoms.

Your child doesn’t want to leave the house. To the point where they avoid it or display fear and sadness when forced to leave.
Your child is always angry. Anxious children are angry because they feel trapped.
Your child is always sick. Anxious kids fear the worst. So they over react to the slightest headache or heart flutter.
Your child sweats constantly. This is a natural physical reaction for kids who are always ready for flight or fright.
Your child can’t sleep. Anxiety leads to racing thoughts. And who can sleep with all that head noise?

 The entire article can be found at Is Your Child Suffering from Anxiety? Five Symptoms to Look For.

Just one of the more basic articles on anxiety, but still significant in identifying many of our issues with Sam. 

The first major step is a change is mindset, from my side. I have lived most of my life with anxiety and on more than one occasion needed medication to help me cope, so one would think I would automatically have this built-in alarm system which would perfectly guide me to a more tranquil little dude, right? Wrong! Sometimes my desire to see Sam enjoying something 'normal' overides my judgement, like yesterday afternoon. We took a drive to the waterfront, not anticipating how frightfully busy it was going to be. Meg and Chris were inside the mall trying to find something to drink but the noise levels were unbearable in there so I pushed Sam outside for a few mins of as-close-as-we'd-get to some quiet. I'd barely got outside when Sam spotted the Big Wheel which, thanks to Mr Tumble, he gestured excitedly at and signed "big wheel". Mommy brain cheered "Yay! Sam likes!" and instantly pushed Sam closer while sensory-cautious brain lay trampled on the ground. 

I have told so many people so many times that Sam likes everything from a distance, I don't know what I was thinking by pushing him closer to the Big Wheel, especially as it meant dealing with the extra noise from all the outside eateries.  50 metres from the wheel and smack bang in the middle of all the folks enjoying their meals Sam went into screech-overload, ironingboard-mode! Chris calls it surfboard-mode, go figure ¶: Either way, you're dealing with a 20kg kid who is in full startle extension, screeching at a pitch that would put a fire engine's siren to shame. In hindsight, it must have been pretty darn entertaining...153cm high, stress-relief smoothie (of all things) yielding woman trying to remove said panic-stricken dude from pushchair...with one hand nevertheless. It was by far our most traumatic social meltdown EVER! And this without vomit even. Me thinks we'll do the hermit thing again this week. No wait, what am I saying...Meg has a soccer match tomorrow. Oh my fragile heart. 

And in other, nowhere near as exciting news... 

Sam lost his first tooth..literally. He swswallowed it during his 7-minute nap and it has never been seen again ;) I was quite surprised that the tooth fell out at such a 'normal' age seeing as he only got his first tooth at 13mnths.  The new tooth is coming out behind his other teeth though so it looks as though a visit to a Macro Craniofacial Surgeon is on the cards soon. Also Sam's relentless teeth-grinding means that another tooth has been virtually ground down into the gum #sigh

Doing our blue bit for World Autism Day

Aha...a possibility for tomorrow's soccer match. Our most successful hockey tournament by far...lots of PT setting the trailer up but Sam was pretty comfortable and even made a new friend :) 

And just looking super impressed with the personalised top Ouma made xxx

Wednesday, April 1, 2015

Special Needs parents are hard to get along with...

A piece by Ellen Stumbo....

"Perhaps some of us special needs parents have snapped, yelled, spit, or barked at friends or family, leaving them utterly confused about our behavior. Who can blame them for thinking, “Well that’s the last time I talk to her!” “What’s wrong with him?” “Is his disability sarcasm? He is so rude!” “Every time I talk to her I’m walking on eggshells!”

Someone googled, “Why are special needs parents hard to get along with.” And well, I don’t blame them for feeling that way…sometimes.

So let me start by saying that yes, sometimes, we are hard to get along with. If you caught us on a bad day, I could see why you turn around and walk away the next time you see us. But that is not the whole story. Yes, sometimes we can be abrasive and rude and sarcastic and hard to get along with…but there is a reason.

You see, so much of the world sees our kids as unlovable, as people without value, as a burden. Even the professionals that are supposed to be on our team can unfortunately communicate that our children’s lives have less meaning, and those messages might even come from the people who are close to us, like family or friends.We feel so alone, but if we don’t fight for our kids then who will?

And we fight, we fight so hard for our children to be included, to be considered, to be given a chance. We are on the defensive, constantly. It’s a battle, a battle that sometimes keeps us up at night, and unfortunately, we have to keep our guard up so often that we forget that there are times when we can put the guard down.

Sometimes we might be hard to get along with. But not always.

I think you would agree that it’s not easy being a parent. Being a special needs parent feels a little bit more challenging.

Would you extend me some grace and know that I have hard days? Will you be willing to forgive the rudeness and the fight? Some days I feel so vulnerable that ugliness comes out, when really, what I need is a friend, someone that I can talk to, someone that will listen, just listen.

And I need to remember that too. I need to extend that same grace to you, because you do not live a life directly impacted by disability, and I cannot expect you to be at the same place of understanding I am at when this is not your life.

I knew so little about parenting children with disabilities when I started this journey. Actually, I knew so little about being a parent before I became a mother! I am still doing the best I can for all my kids, learning, messing up, some days getting things right. Being a special needs parent is not something that anyone can be prepared for. You just have to live it.

So I am sorry if I have ever offended you, it was not my intention. And I need to remember that as well, that you never intended to be offensive either. If I am hard to get along with, please offer me some grace. I will do the same for you. I know I need to extend the same consideration I want to receive back.

I need your friendship, I need your support. And I like to believe that you need mine too, because this giving and taking is part of friendship.

Let’s do some more grace giving, some more forgiving, some more laughing, some more, “No big deal!”

A postscript: Some people are simply mean and inconsiderate human beings who have no qualms at making derogative comments. Well then, you had that coming, nobody messes with our kids."

So. This post. Special Needs parents hard to get along with? Are we really?  Occasionally a little over-emotional maybe, crazy-passionate about advocating for our kids here and there...distracted by lack of sleep sometimes, forgetful of the odd birthday or therapy appointment...Oh no, hang on! That's just me ¶:

But I'm not sold on the "hard to get along with" thing. We're a growing community of special needs parents here in our little piece of the world and I'd hardly refer to any one of these people as hard to get along with, especially in a way as described in this article. 

Sure we have bad days, you know, like everyone does. Sometimes the unending struggles our kiddo's deal with can dampen the spirits ever so slightly. I know I went through a self-inflicted stage of solidarity...I felt it was inconsiderate of me to burden others with some of the more challenging of Sam's social/anxiety issues so playdates and party invites were regularly and repeatedly graciously declined. The thought of having the hard work a friend has put into her child's birthday party ruined by a puking little dude was as heartbreaking as the thought of strangers thinking badly of my little dude, possibly meeting him for the first time.

(An interesting sidestep about Sam's vomiting in public - most people presume that I've made a poor decision as a parent by taking my sick child out in public, which is also a little troubling. After often being asked if Sam's sick, I now find myself explaining frantically to anyone within earshot that the throwing up is just a result of his high anxiety levels)

But rude? Ugly? Abrasive? I don't believe I've ever been any of these to anyone I might call friend (or stranger for that matter) and having a child with special needs certainly wouldn't give me an excuse to be so. Almost everyone is fighting a battle of some sort, imagine if everyone going through a rough patch adopted this attitude? I've a feeling that if you're prone to snapping, yelling, spitting and/or barking at friends, it's a part of your personality that would be there whether you were parenting a child with special needs or not.

An article like this does worry me a little as it could well deter someone from making a connection with the parent/s of a child with special needs. Of course, I cannot speak on behalf of my own friends who might well consider me hard to get along with...but if this be the case then they're pretty darn awesome friends for sticking with me through it all....

Sunday, March 29, 2015

The unchanging....

If I had a Rand for every person who's ever told me how great it is that I can remain lighthearted about most of our challenges, I'd have...well a handful of Rands...enough to buy a lottery ticket and put me in the runnings to become a MILLIONAIRE! (As long as "millionaire"'s somewhere in that equation, right?) Usually I laugh and say "Well, if I don't laugh, I'll cry...and if I start crying, I'm not sure I'd stop" and then we laugh some more.

Few realise how completely honest I am being.

Some days I just can't muster the energy to fake okay. Today is one of those days.

Sam has many issues relating to his RTS, Cerebral Palsy and Autism. Some are pretty straightforward...reflux, constipation, etc...some are more serious...apnoea, physical abnormalities, odd seizures, etc. I can live fairly peacefully with almost all of these and the care they require. They are all tangible issues...things I can feel or see or smell or hear.  They are all fairly common issues too, maybe not always effecting one person at the same time, but isolated they are all issues that when discussed with someone else they are easily recognised and relatively easy to treat, whether it's upping Movicol, reducing fluids before bed, sleeping on a wedge, having regular physiotherapy - they are mostly tangible problems with tangible solutions.

They are the easiest part of our journey.

And the hard part? The hard part is something that cannot be seen or heard or felt or smelled. If you sent Sam for an MRI/scan/scope it would not show up like a tethered spinal cord or malfunctioning oesophagul valve or thickened bowel wall or funky airways or Periventricular Leukomalacia or any of the other things responsible for the above ailments.


Irrational, uncontrollable, all-consuming, life-draining FEAR!

You just cannot begin to imagine what sort of fears a 5 year old could possibly have that might be anywhere near as debilitating as what I'm trying to imply. Let me blog you through our last 36hrs....

After averaging yet another night of only 3-4 hrs sleep, Sam woke grumpy, with a grumbling tummy due to his growing aversion to anything remotely resembling food and the sight of his dad in bed next to him. Yes, sounds like a harsh statement for me to make but Sam knows that Dad not going off to work means weekend which in turn means a change to his daily routine. Pediasure bottle made and handed to shaking hands - Sam has a fear of liquid moving, whether it's waves at the beach, water from a sprinkler, water poured over him in the bath or, as in this instance, milk swishing about in his bottle. It takes him a good few minutes to build up enough courage to put the swishing milk to his lips, almost choking as his shaking prevents him from swallowing calmly. Still, it's an accomplishment as sometimes fear trumps hunger and the bottle goes flying to the floor as if it might cause him physical harm. Fear 0 : Sam 1

Once we're all showered and dressed, off to the kitchen to prepare Sam's porridge. Throwing good parenting skills out the window, I put Sam in front of the TV with his favourite show hoping it will distract him enough to at least tolerate a few spoonfuls. Fail. The second I bring the bowl in he starts gagging. Fear 1 : Sam 1

Dad leaves to drop his car off at service garage. Needing to follow shortly so that I can collect Dad and we can go to shops, I opt for another Pediasure bottle. Sam spots bottle entering the room, gags and throws up what's left of the previous bottle. Fear 2 : Sam 1. Off to fetch dad and brace month-end shoppers on an empty stomach. Or so I thought.

Arrive at service place, walk into dimly-lit garage to see how it's going with car. Sam starts gagging. Mom does not panic as there can be precious little left in the kid's stomach. Wrong! Sam showers the parking lot and mom with a surprising amount of fermenting Pediasure. Fear 3 : Sam 1

Back home to shower and de-puke. Survived a thankfully uneventful shopping trip for nappies and Pediasure. Once home and after yet another food-sighting-induced-gag-session, Sam manages about 5 spoons of mashed potatoes and 120mls of Pediasure. Desperate to have this small helping actually digested, remain at home. Another night of restless, body-bashing follows.

Sam wakes a little more cheerful this morning until his bottle is placed in his hands. More gagging, but luckily this time puke-less.  Same story as yesterday when porridge bowl is spotted. Surrender and head off once again to supermarket for the rest of the family's needs. Barely in shop a few minutes when employee decides to remove the strip which keeps the prices in place on the shelves. The 'ripping' noise sends Sam into instant gagging mode and over the next few minutes, Sam empties his entire stomach's contents (?) all over the trolley, shop floor and himself. Mom flees with vomit-saturated kid and scarlet-faced teenager, leaving Dad to finish the shopping. Back home for bath and de-puking. Before heading back to shop to collect Dad, Mom swings by local church to collect two generously gifted items for her new playgroup. Upon pulling into the unfamiliar parking lot and choosing to park right in front of the open doors, a motherload of Pediasure is projected from Sam's stomach. Sam, carseat and car's seat all drenched. Phone Dad to advise we are headed home first for de-puking. Once Dad and groceries have been collected, retreat to our cave giving up (once again) on the Sunday afternoon family outing.

Washing machine works overtime for the remainder of the day, family members tiptoe around with their own food to avoid further gagging and eventually, after a mere 320mls of Pediasure for a straight 24hr period, Sam falls asleep exhausted from a day filled with unexplainably frightening things.

Mom sits next to him on the bed, listening to his grumbling tummy and shushing him when he whimpers in his sleep, feeling helpless and lost about how to help him. Is it possible to avoid all the things that cause her 5 year old so much anxiety? Yes, of course...but it means never leaving home. She wipes the tears from her cheeks as she reminds herself that no-one gets this part of Sam...of their lives, especially the doctors and specialists...and realises that until someone does, it can't ever change.

FEAR 54785588 : MOM 0