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...
SAMUEL - COMPLETE IN GOD
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)

Tuesday, February 24, 2015

Lost in Translation

Perhaps a more accurate heading would be "Lost in Interpretation" but it doesn't quite grab one the same, does it?

Either way, the way Sam interprets information sure is fascinating. When I was sort of groping around for behaviour guidance, I introduced a naughty chair as a means of discipline. And then loaded a pic of it onto the iPad together with the other items relevant to Sam's life, as well as to all those beautifully professional hand-drawn books Sam has a habit of dragging out of the woodwork...particularly when we're going out in public. Next to the naughty chair was a little poster displaying which possible actions would have landed that smurfy little posterior in the chair and what the acceptable alternatives would have been, eg. smacking vs soft touch.

Well no sooner had I added them when I had to remove all the pics because Sam would be happily flicking through them, minding his own business, until a pic of that darn naughty chair popped up. Then instantly his hand would go out and slap whoever was within range...slapping meant naughty chair and naughty chair meant slapping.

By now it's become common practice (with all children) to reinforce positive behaviour as opposed to focalising negative behaviour, eg. don't throw vs please put down softly. Sounds pretty simple, doesn't it? Except when the 16yrs of parenting prior to needing a more attentive approach to a child with communication challenges was filled with "No's" and "Don'ts", those allegedly-detrimental statements always seem to run a kickbutt race to the finish line that is my mouth! #thehorror

The other problem of course is the very simple fact that, when finished with something, the more natural process seems to be to throw it down instead of putting it down, well for Sam anyhow and, from what I can remember, a few of Sam's RTS siblings have/had a tendency to do the same. For this reason, I very seldom take the iPad with in the car and, on the odd occasion I do, it is only when there will be someone sitting next to Sam at the back. Up until last Friday that is.

About to leave home for a particularly long wait outside Meg's school, I passed the iPad on the table just as I was wondering how I was going to keep Sam occupied in the warm car. A quick back-and-forth of "Should I, shouldn't I" ensued and before I knew it, Sam was in his carseat and being handed the iPad.

DO NOT SAY "DON'T THROW!"
DO NOT SAY "DON'T THROW!"
DO NOT SAY "DON'T THROW!"

"Sam, when you are finished with the iPad, ta for Mommy"

"DO.NOT.THROW.THE.IPAD!"

WHAT??? WHO SAID THAT???

Well, before I had the chance to pounce on the sneaky scoundrel who'd dared utter those words (in a remarkably similar voice to mine, I might add) , the iPad was out the still open door and hitting the cement floor with a stomach-curdling CRACK!

Mom's reflexes    :  0
iPad repair place :  3

There very nearly wasn't a 3rd round for the iPad repair place with more pressing issues needing attention, but Sam's granny came to his rescue by offering to see to the costs. And, with today been the fourth day without his electronic appendage, frustration and lack of understanding why he could not have his iPad, reached an almost unbearable high and saw me getting walloped on the forehead with a wooden hammer during occupational therapy.

Mom's reflexes   : 0
Bump on noggin : 1

Hmmmmm...perhaps it is I who is lost in translation!

Tuesday, February 17, 2015

The Do's and Don'ts of interacting with parents of children with special needs?

Over the years I've often read articles offering guidelines (?) on all the Do's and Don'ts one needs to keep in mind when interacting with parents of children who have special needs. In the beginning I would read through the points, thinking to myself that it was an article I may as well have written myself, it was THAT relative, softly rebutting folks who stare and then in turn, rebutting those who didn't look...who offer the "God only gives special kids to special parents" and so on and so on. But as time went on, I found myself vacaying on the fence for a while, seldom actually opening the links I found zooming passed on my timeline. Then, as the articles seemed to be posted more and more frequently, I worried that I might be missing something new so turned to reading through them again but now find myself becoming concerned that we, as parents who quite often fear becoming isolated from society due to our children's differences and challenges, are making ourselves almost unapproachable by constantly advocating these fairly uncompromising "rules" others need to adhere to when our paths happened to cross.
 
It goes without saying that certain things do remain an absolute no-no...judging another's walk when you know nothing of their journey is never okay and all the ad-hocs that go with that sentiment...disapproval or scorn in any shape or form is malicious to anyone, whether effected by disability or not. I think parents of children with special needs just have a supersonic radar that picks up more easily the possible "starers"and "scorners" so we are more aware of them. Within seconds of entering any social setting, be it 10 people or 100, I have identified our "critics" and found myself migrating to those who seem more less taken aback by the flapping , often screeching-in-protest little guy leading our flustered convoy. 
 
The very first official day of Meg's high school career saw me heading to a very long queue at the school's financial office, this after waiting in the parking lot for 
at least a half hour first. By the time we joined the back end of the line, Sam was on 99% FULLBLOWN MELTDOWN...with the only element stopping us from that extra 1% being the already-threatening vomit. Just to make it that little bit more exciting, no sooner had the wheels of his pushchair reached a stop when a gentleman carrying out some DIY chores started up on his drill, about 2 metres away! There were easily 10-15 ladies surrounding us and do you know how many stared on in obvious disapproval? Just one! And the rest? The rest of the women instantly jumped on board, two staff members asked others if we could be moved to the front of the queue and requested the contractor to quiet his drill until they advised him all was okay and the mom who had given us a place upfront tried to distract Sam, along with another two moms, while I made my payment. Imagine where I'd have been if all those involved had first had to mentally tick a checklist of what to do and not to do! I'd have been sweeping up loads of semi-digested bananas and yoghurt with wetwipes while they still pondered No. 2 on the list. 

So many times I've heard the saying "It takes a village to raise a child" and it most certainly does, that afternoon was a wonderful reminder of just that ...so you need to make sure you're part of that village too by being approachable (how else will others learn?) and (and this is the hard one) by being forgiving. There are always going to be those ignorant few whose inconsiderate stares and uncalled for remarks will break you down...just a little. But there are so many more who make up for these imbeciles' poor behaviour! JUST KIDDING! #winkwink 

Seriously, I'd be near devastated to find out that a fear of offending, instigated by all these Do's and Don'ts floating around, had preventated someone from offering a smile, striking up a conversation...becoming a part of our village. 

Just for interest's sake, this was the most recent Dreaded Statements List wafting on the web : 

1. Wow! You must be so busy? 
2. I'm sorry. 
3. You're lucky you have a normal kid too. 
4. He'll catch up. 
5. You should take care of yourself so you can take care of him. 
6. We're only given what we can handle. 
7. Have you tried... 
8. Kids aren't really autistic, they just need discipline. 
9. What's wrong with him? 

Sure, No's 8 and most definitely 9 might elicit a somewhat sarcastic remark from myself (I've already thought of at least 5 fab comebacks for No. 9), but I've never had anyone say anything of the sort to us. Go figure! 

Aaaaand in other Smurfy News...we've had a one-on-one session with the lady who runs the SNAP Academy, which has been a bit of a saving grace, and we're looking forward to another session this weekend. I'm still way out of my depth with the Autism thing and needed someone to guide me as to when to indulge Sam's sensory/anxiety issues and when to stand firm. Having a clear protocol to follow sure does provide a bit of confidence when it comes to going out with Sam. And we've also introduced some chores into Sam's life like washing dishes, picking up toys, etc. (all with the necessary support of course). 

While we were on a roll trying new things, I thought it a good time to introduce Sam to a sippy cup. I couldn't have been more horribly wrong!!! You cannot imagine the amount of vomit this seemingly-unremarkable item caused in our home...simply by its presence on the kitchen counter. 


 



For the first time last week I noticed Sam engaging in a little imaginative play and playing independently (he usually requires constant interaction) 



And just for the sake of ADORABLE!