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)

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....

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