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)

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 '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 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 I can't say I'm loving the use of the word "tolerate". It seems better suited for other situations, eg. I'll tolerate a little chocolate mousse for pudding if I absolutely have to! Okay no, that's not a great example. How about - I'll tolerate a little One Direction in the car if I have to...for like two minutes max at a time...every other day...with the volume on 1.

Regardless of my word preferences the message, however, being communicated through the article is really quite relevant and hopefully extremely thought-provoking.


"How are you different? How is your child different? Learning to recognize common ground can be uniting, but learning to recognize and accept differences can be just as endearing. Tolerance is not just a buzzword exploited by the media in today’s society, but is a core social value of America. America has been labeled “the great melting pot,” because of its tendency to bring people of all races, religions, and ideals into one place. It is a place of diversity, and therefore a place for tolerance.

Marie Curie said, “Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.”

Tolerance is the key to increasing understanding and decreasing fear in our next generation, our children. Tolerance is acceptance, openness, and respect for differences.

But how do parents promote this healthy appreciation and respect for these differences that make us so great? Children, at very young ages, are often exceptionally aware and honest about differences they observe between themselves and others, but rarely attach judgments to those candid observations.

We adults are the ones that do that!

You may have heard a parent in the grocery store shushing their three-year-old who says, “Mommy, that man is very big!” or “Daddy, that girl has pink hair!” These observations are often expressed in form of a question like, “Why does that man have such dark skin?” “Why does that lady wear that long robe?” “Why is that boy in a wheel chair?” These are perfect opportunities to teach the core social value of tolerance. What we do and say in these crucial moments can help to mend wounds and bridge chasms between different people that have been incurable in the past.

Being willing to put off the awkwardness and to talk openly and honestly with our children about their questions is just the tip of the iceberg of how we can teach them tolerance and acceptance :


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."

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