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)

Friday, August 29, 2014

Riddle me this....

Riddle me this
Riddle me that.
Some days are peaked,
Some days are flat.

Riddle me here
Riddle me there,
Senses unclear
Best beware!

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!

↑ If it wasn't for the hilarious notion of being able to sit down to have a cup of (warm) tea (Oh yes please) this would have been a pretty accurate picture. 

So there was little else to do but sit Sam down in front of me (for more effective vomit-catching efficiency) and switch the hairdryer on. I first only tried about 10 seconds then stopped, expecting to see that 'I'm about to share some projectile vomiting" face. Nothing. Tried another 10 second round, then longer, and longer. Nothing! I had just started my internal whoop-whoop celebratory dance at having (finally) conquered something sensory related when it hit me. I've chopped off my hair for nothing!  
Bum! 

Luckily, Sam's sensory challenges being the chaotic labyrinth of unpredictability that they are, I will quite likely pop the hairdryer on tomorrow morning only to have him shower us all in some or other partially digested substance. Oh the anticipation! 

So other than those fabulously entertaining sensory issues, there's been nothing particularly interesting to report. We've signed Sam up for the home programme at the Chere Botha School just to have a little guidance as to what next I should be teaching him. Having mastered numbers, shapes, letters and colours some time ago I am not 100% certain where to move onto next. While Sam's physical abilities are obviously compromised, the home programme co-oordinator was very obviously impressed with Sam's intellectual strengths, especially when I showed her how I 'test' Sam by drawing several balloons in black and then write the names of the colours inside (also in black so as not to give Sam any hints) and then set all the colour crayons out next to Sam. He will, without hesitating, correctly read the name of the colour needed and select it from the lot and colour the balloon in. Fair enough his colouring skills need a little attention, but it was a very proud mommy moment for me made even sweeter knowing that it's a skill I taught him myself ♡♡♡

Tuesday, August 5, 2014

If I had to ask you...

...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.

xxx

"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

Let's assume...

...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.