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)

Thursday, January 26, 2012

Conquering SPD

I have mentioned several times on this blog just how challenging I find dealing with Sam's Sensory Processing Disorder and have even stated the extreme on occasion...that sometimes I find the SPD more debilitating than his RTS. Naturally the more extreme statements are usually made after a particularly difficult incident or phase, but nevertheless I have no doubt that SPD on it's own, without any other additional diagnosis or condition, could handicap a child severely enough to cause major neurological delays and social complexity. With Sam's SPD going through erratic changes, almost on a daily basis, I have been trying to read up as much on the condition as I can in the the hope that I might just discover a course of action we might have overlooked or any other useful piece of information that might prove helpful. I have read many accounts of what it feels like to have SPD, some of which report that having SPD is like :
  • having a whisper sound like yelling
  • feeling like your clothes are all made of fibreglass
  • being in a moving car of which you have no control with none of the equipment working properly
  • not being able to sense your body's position in the space around you or as one person put it "You felt like someone had given you a shot of Novocain in your backside so you couldn't feel if you were sitting in the middle of your chair or the edge and you fell off"
  • You could see obstacles in your way, but you could not make your body move the direction you wanted it to to avoid them.
  • You tried to drink a cup of water from a paper cup, only you couldn't tell how hard to squeeze it to hold onto it. So, you squeezed it too hard and the water spilled all over you. The next time you didn't squeeze it hard enough and it fell right through your hands and onto the floor.
  • Every time you tried to write with your pencil, it broke because you pushed too hard.
  • The different smells in a room can make you utterly nauseous.
  • You can't focus your eyes on any one thing because everything and everyone in the room catches your attention and your eyes just go there instead.
  • The lights are always so bright you have to squint. In fact, one dad said that his daughter's SPD was so severe that if sunlight touched her she would scream as if in pain.
  • Every time someone touches you, it feels like they are rubbing sandpaper on your skin. 
  • The tag in the back of your shirt makes you feel as uncomfortable as you would if a spider was crawling on you and you couldn't get him off.
  • You wanted to write something down but it took you at least 5 seconds to form each letter. You can see the letter in your head, but your hand will not go in the right direction to write it.
  • Having constant motion sickness
Unfortunately there were no new methods of treatment waiting to be discovered by my eager eye, just the usual advice to seek the help of an occupational therapist. The thing is that we've being doing pretty extensive OT for almost exactly a year now and, to be honest, just finding our way back to our original starting block a year ago would be an improvement right now. I have to confess though that about a week or so ago I got so fed up with our, seemingly useless, sensory brushing that I half convinced myself (okay...maybe a little bit more than half) that the sensory brushing was perhaps doing more damage than good. I even found myself trying to replay those first few instructive OT sessions over in my head in case I'd perhaps, in the interim, managed to completely hash the whole process up and was now making Sam more defensive by incorrectly brushing him. I had two fairly convincing reasons encouraging my wayward thinking though with the first being a rather embarrasing situation at Meghan's school one afternoon when I decided to take Sam out of his carseat to sit upfront with me while we waited the half hour until the school bell rang. I agonised over the decision a good few minutes knowing that trying to sit Sam on your lap in a car lately is usually taboo (which isn't all bad because it acts as a built-in safety mechanism ensuring that he is always in his carseat) but was pretty confident that if I moved slowly and carefully enough he would be okay. So, in clear view of all the other cars parked at the school (largely due to the overly cautious and timeous moms the first week of school usually brings with it) I lifted Sam from his carseat in the back and tried to get back into the car on the driver's side. It is at times like this when referring to sensory defensivenes seems so much less appropriate than simply calling it blind fear. Sam clung onto my neck and hair and ears and any other part of me he could claw onto as if the dashboard and steering wheel had suddenly grown a giant set of gorging, hideous jaws and were trying to devour him alive. I persisted for about five minutes but by then Sam had not eased up so I decided to rather put him back into his carseat...noting rather anxiously that the carpark had filled up even more.

What do you think the chances were that Sam was going to be placed calmly back into his carseat? All I did was make a slight movement towards the open car door and off Sam went, into his sensory bermuda triangle where all things rational seem to disappear. I made a few more desperate attempts to lower Sam in but he just became more and more distressed. And there I stood. I resigned myself to the fact that I would have to wait a good twenty minutes out in the sun until Meg finally came out and then would have her get into the back of the car first and try from there to cajole Sam into his seat, which has actually worked before. My last attempt at trying to end the very entertaining show I was providing for the other parents, was to put on Sam's little portable dvd player which, thankfully, had a Barney Sing 'n Dance dvd in and, after having to dance outside the car for a couple of minutes first, tried to "dance" Sam into his carseat. There proved to be some logistical obstacles...but low and behold, it eventually worked (with a total of about four minutes remaining before the school bell went anyway). And yes, I have resumed Sam's  (be it correct or not) brushing.

As if that wasn't unsettling enough, exactly five nights ago Samuel started freezing up when I tried to put him into the bath. Washing his hair in the bath has always been a bit of a challenge, more specifically the motion of lying him down in the bath and then, which seems to be the most distressing for him, sitting him back up again. While hair washing has always been carried out with a degree of resistance from Sam, his love for bathing and being in water always seems to prevail. Or rather, used to. Try as I might, I could not get Sam to sit in the bath on Sunday night. He clung to me as if I was trying to hurl him over the edge of an unimaginably steep cliff. After several minutes I gave in the towel (figuratively speaking) and just sponged Sam down while Chris held him over the bath of water. And, with the exception of one evening when we tried almost wrestling Sam into the bath but then had to take him out just seconds after as he was so upset, that's how we've had to bath him every night since. It is such a shame having to give up Sam's bath time...that was our little reassurance at the end of each day as Sam played carefree with his foam numbers (to the sound of the constantly running tap, of course) that, no matter how trying the previous 24hours had been, we got to give it another go the next day. Who would have imagined a simple bath could mean so much? (I seriously have to get out more).

I am so completely lost and out of my depth with this sensory thing. It is killing me emotionally watching him spasm in pure fear at doing things which the rest of us do without a second's consideration. I FB'd our little RTS group recently and asked advice from the other moms and Sam is certainly not unique with his SPD. Patience seems to be the key. Evidently that set of keys has also been lost in a Bermuda Triangle somewhere.

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