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, May 28, 2015

Mommy Malfunction

Can you believe our little dude turned SIX on the 15th of May? WOW! I have to say that I expected another bout of melancholy to do the rounds, as it did this time last year when we found out days before Sam's 5th birthday about the Cerebral Palsy, but thankfully not so much. Yay! We did, of course, keep it low-key and instead of splurging on a birthday party (which Sam would most likely not enjoy) and a handful of pressies, we all rather clubbed together to buy Sam a Woody doll. And he absolutely loved it! Especially the moving arms...the kid ain't that fussy at long as the arms move, the doll can be headless, legless, whatever! He's flexible like that ;-) 

The day after Sam's birthday we did our first ever parkrun with the 'FLINK STAPPERS'  (watch this space)! Sam tolerated the 5km's way better than I expected (which in essence means there was no vomit) so when a suggestion for a cup of coffee was thrown out there, we were like "Coooooool!" as if it's something we do all the time. But by the time we were en route to the coffee shop thoughts of "This cannot end well" had beaten the earlier "cooooool" to a pitiful pulp. The thought of having to catch puke in a public eatery can do that to the best of us. But what do you know - the little dude was as good as gold! Think he shouted out once or twice for whatever reason but, considering he was the only kid there (this should have been my "A-ha" moment) , it was hardly unbearable. 
The Flink Stappers!
The very next day, still riding on the previous morning's successful outing, we decided to have a bite to eat with my sis at a local FAMILY restaurant. Oh. My. Hat! Not the wisest decision I've ever made. We were immediately off to a shakey start from the get-go with Sam trying to knock placemats, etc off the table. Thinking a quick walk through the play area would provide adequate distraction, off Sam and I went. Minutes later 153cm's of frantic mother was seen fleeing the restaurant with a screeching, flapping dude in tow ("in tow" meaning awkwardly dangling from my hip area).
Aaaaand the week was downhill from there. With Risperdal being the evil anti-psychotic drug that it is (?)and, in my mind, the root of almost all of Sam's behaviour problems, I was desperate for our weaning-off process to reach its end. With Sam being on such a low dosage that there is not even a measurement for it on the Risperdal syringe and having been on his natural alternatives for almost a week, I decided not to fill the next repeat and so, that Wednesday evening, we went cold turkey...this time by choice. Choice? A funny thing that...and not 'ha ha' funny but funny like 'why do I always make the wrong one', if that can be seen as funny. 
Take the Tasmanian Devil, squish him into an Angry Bird t-shirt, together with Eeyore and that's pretty much the essence of the tormented little character we were dealing with.

If I had a Rand for every time I've said that in the last six years, I'd be hobknobbing with the Ruppert's. After six night's of Sam managing a maximum amount of sleep of around two hours (the rest of the night spent bashing himself violently from side-to-side) through uncontrollable tears and stifled sobs, I typed an e-mail to Prof Prof (a nearby paediatrician Sam saw very briefly last year when my injured ankle prevented me from driving) at 1:10am on the Tuesday morning, asking if I would be causing any harm by putting Sam back on the Risperdal! I only half expected a reply seeing as Prof Prof had not benefited from having Sam as a longterm patient (we had only seen him twice and the second visit, after hours of all things, he had not charged us for as I had mistakenly imagined seeing something in Sam's ear. #sigh ) but low-and-behold, at 1:34am my tablet lit up. A reply! With an instruction to give him a call in the morning. More sobbing...but this time full of thankfulness.

After a quick phone call the next morning to explain the situation and my reasoning for wanting to stop giving Sam the Risperdal (which had been my wanting to limit the amount of chemicals we are pumping into Sam's system on a daily basis, relying on natural remedies instead, especially as I had not seen a significant improvement in Sam's quality of life since starting Risperdal) Prof Prof a) refrained from berating me for opting for the natural remedies and instead reassured me that for peace of mind, it was good that I had at least given it a go and b) suggested that we immediately put Sam back on the Risperdal on the same dose he was previously on, but administered differently, ie. instead of a once daily dose, splitting the dose in two which should almost immediately settle my first complaint, that the Risperdal was not helping Sam during the day.  After a quick chat over the phone with our local pharmacist, I was advised that I could go collect Sam's Risperdal that very evening.

This week has been a complete contrast to last week. On Monday we headed off to our most dreaded chore, shopping.  There was probably a total of seven items on the list which would usually be carried out in a frantic 10-mintue whirlwind. This time Sam was so calm that Meg and I actually dragged our feet a little and I half-wished there was other things I needed to buy in order to take advantage of Sam's not-often-seen content being pushed around the shop.  Yesterday afternoon we had an appointment with Prof Prof, who was running a little late due to an emergency. After a half-hour wait Sam would normally have been climbing the walls...or painting them with something other than paint.  Although he did protest loudly whenever a baby cried, he was so unbelievably good and not once did he strike out when anyone came too close to him - this alone is a HUGE change! 

After sharing an impromptu slideshow presentation with me, as well as the benefits of using certain medication to help improve the quality of life for a child with Autism and reassuring me that I am not "frying" Sam's brain with the rather lengthy list of medications he takes daily, Prof Prof made probably one the most profound statements to me that anyone has done in a long while...

Many, if not most, of Sam's RTS peers have Autistic traits which often present in sensory challenges. However, I believe, their "main" diagnosis remains Rubinstein-Taybi Syndrome. Should you remove that funky little CREBP Gene from their genetic make-up, the chances are their Autistic traits and the sensory challenges related to it would quite likely disappear too. I shared a sentiment here quite some time ago though that, should we be in the glorious position to somehow completely remove both RTS and Cerebral Palsy from Sam's system...he would still be dealing with the exact same challenges he faces now on a daily basis....perhaps just without those funky little thumbs and the several scars he bravely wears reminding us of some of the more severe medical conditions related to RTS. 

In summing up our consultation yesterday afternoon, Prof Prof started with "So, we're dealing with Autism and Cerebral Palsy with underlying Rubinstein-Taybi"!  Oh my gosh! I almost started bawling right then and there. Someone gets it...someone sees passed the RTS and acknowledges and understands the significantly larger role Autism is playing in our lives. We left the hospital feeling more focused and 'together' than we have in a very, very long time. And I say "we" because somehow Sam seemed more peaceful too, firstly by eagerly signing "doctor" when I pulled the car into the garage and secondly by having such an incredibly good night's sleep last night that I had to keep putting my hand on him to make sure he was breathing!!!

And, to add yet some more positivity and hopefulness to this week, we got to have another SNAP Lite session with Aunty Annelies.  I still can't get over how mesmerised Sam is by her. When she's sitting on the floor working with him, Sam is almost unrecognisable.  She keeps him so focused and capable...the results she draws from him are amazing and not to mention what a wealth of information she is with all sort of wonderful "tricks", like using playdough to help train the brain to see and recognise outlines. 

A little more than a week ago, I sat with a guilt-ridden, near-hopeless heart...not knowing which way to turn and dealing with the anguish of possibly making my son's journey so much more difficult and impossible by constantly making wrong decisions. 
This week, as I write this, my heart wants to explode with hope and the reassurance of a way forward.
And now, please excuse me while I go find myself a crossbow, rifle...heck even a paintball gun will I can go hunt that schmuck, Murphy, down before he sees that as an invitation xxx 

Wednesday, May 13, 2015

Swing High, Swing Low...

....Sweet Chariot, coming 'for to carry me home!
Well, I don't know about having someone to carry me home (unless I count myself) but swinging high and low there's been a plenty, with a little bit of swinging upside down, sideways and all over the place...enough to land me a blue eye that might've had you thinking I'd been socking it up with Mayweather and Pacquiao. Guarantee it would've been a bit more of an entertaining fight at least #snaughle (Lame? Yes, I know)
So...swinging low. After gathering up a 2-3 year store of ailments, I found myself, about two weeks ago, having to make a doc appointment for myself. Mmmmm. A doc appointment where the lap and arms usually needed to comfort and/or catch vomit were going to be otherwise preoccupied?Nevertheless, off we went one rainy Thursday morning full of jittery energy. ("we" meaning me). Found a parking spot right in front of the entrance - yay! Shortlived celebration as the little dude started gagging the second I turned the car off.  Minutes into the consultation Sam started screeching and trying to buck himself out of his pushchair. After a rushed and chaotic examination and half-listened to diagnosis, I hightailed outta there, hitting the sidewalk just as Sam started projectile vomiting (Not so much a "Yay" for parking right at the entrance in full view of the waiting room, anymore). I kept a hand tapping on his chest (for some reason this sometimes seems to help) while stretching over to open the wet car door but just as I did that Sam started choking and as I turned round to check on him the door slipped out of my hand and wholloped me good and solid in the face. The blood dripping down my face told me I should be crying but really, it was all I could do to keep from plonking myself down on the ground, in the rain, and giving in to hysterical, uncontrollable laughter.
Somehow managed to transfer 20kg's of puking little dude into the car with one hand, while holding my eye with the other. Who knew a person's eyeball could move so flexibly? Did an awesome one-handed fold up of the stroller just as I noticed a beautifully-packaged young lady exiting what I'd thought was an empty, stationary car right across from us. Luckily she found us/me too pitiful a sight to even make eye contact as she walked passed and kept her eyes on the ground. Oh well.
Saturday morning we attended the birthday party of a beautiful little girl....more puke and striking out at the other kids shortly after we got there. Swinging low...again. Excused ourselves early, headed home for some quick puke-damage control and then off to our local Hypermarket, a-buzz with month end shoppers, expecting round 3 of swinging low for that week. Nope. The kid was as calm as could be...swinging high. It's really kind of frustrating not being able to identify specific triggers, which might make outings that little bit easier to manage. But he's constantly-changing triggers seem to have us roped into a warped type of Russian Roulette...just with puke instead of a bullet. *sigh
Last week Saturday was a day filled with some more swinging high, thankfully, when I managed an alarmingly disaster-free talk to a room full of Gatsby-clad women, for a Ladies Tea hosted by the Daniel and Friends Fund at the beautiful La Provence Stellenbosch. It was probably one of the most invigorating and motivating experiences I've had in some time (public speaking is not quite one of my forte's) made that much more exciting by the fact that the occasion was all to raise money for a fabulous cause, the Equine Therapy Project at Haven of Hope Equine Aid Centre, a project close to Daniel and Friends Fund's heart.
I am still busy reading up on as much information as possible regarding Anxiety Disorders, particularly in children with Autism. Most of the info is fairly obvious, but sometimes reading it in black and white, furnished by a third party, makes it grab you a little more. Knowing that I do struggle to contain my own anxieties sometimes (like the occasional, pre outing near-panic when I have to go out alone with Sam knowing it could well end in him having a meltdown and throwing up in a shop...again!) has really hit home with how it in turn feeds Sam's own, already very present anxieties. So we're working on it...and soaking up any bit of advice available...
How to Avoid Passing Anxiety on to Your Kids

On a recent afternoon, JD Bailey was trying to get her two young daughters to their dance class. A work assignment delayed her attempts to leave the house, and when Bailey was finally ready to go, she realized that her girls still didn't have their dance clothes on. She began to feel overwhelmed and frustrated, and in the car ride on the way to the class, she shouted at her daughters for not being ready on time. "Suddenly I was like, 'What am I doing?'" she recalls. "'This isn't their fault. This is me.' "
Bailey has dealt with anxiety for as long as she can remember, but it has become more acute since the birth of her second daughter, when she began to experience postpartum depression. She knows that her anxiety occasionally causes her to lash out at her daughters when she doesn't really mean to, and she can see that it affects them. "You see it in your kids' face," Bailey says. "Not that they're scared, but just the negativity: 'Oh my God, my mommy's upset.' You're their rock. They don't want to see you upset."
Taking cues from you
Witnessing a parent in a state of anxiety can be more than just momentarily unsettling for children. Kids look to their parents for information about how to interpret ambiguous situations; if a parent seems consistently anxious and fearful, the child will determine that a variety of scenarios are unsafe. And there is evidence that children of anxious parents are more likely to exhibit anxiety themselves, a probable combination of genetic risk factors and learned behaviours.
It can be painful to think that, despite your best intentions, you may find yourself transmitting your own stress to your child. But if you are dealing with anxiety and start to notice your child exhibiting anxious behaviors, the first important thing is not to get bogged down by guilt. "There's no need to punish yourself," says Dr. Jamie Howard, director of the Stress and Resilience Program at the Child Mind Institute. "It feels really bad to have anxiety, and it's not easy to turn off."

 But the transmission of anxiety from parent to child is not inevitable. The second important thing to do is implement strategies to help ensure that you do not pass your anxiety on to your kids. That means managing your own stress as effectively as possible, and helping your kids manage theirs. "If a child is prone to anxiety," Dr. Howard adds, "it's helpful to know it sooner and to learn the strategies to manage sooner."
What to Do (and Not Do) When Children Are Anxious
It's tempting to protect kids from things that make them anxious, but learning to tolerate anxiety is how we overcome fears.  

 Learn stress management techniques
It can be very difficult to communicate a sense of calm to your child when you are struggling to cope with your own anxiety. A mental health professional can help you work through methods of stress management that will suit your specific needs. As you learn to tolerate stress, you will in turn be teaching your child—who takes cues from your behavior—how to cope with situations of uncertainty or doubt.
"A big part of treatment for children with anxiety," explains Laura Kirmayer, an associate psychologist at the Child Mind Institute, "is actually teaching parents stress tolerance, It's a simultaneous process—it's both directing the parent's anxiety, and then how they also support and scaffold the child's development of stress tolerance."
Model stress tolerance
You might find yourself learning strategies in therapy that you can then impart to your child when she is feeling anxious. If, for example, you are working on thinking rationally during times of stress, you can practice those same skills with your child. Say to her: "I understand that you are scared, but what are the chances something scary is actually going to happen?"
Try to maintain a calm, neutral demeanour in front of your child, even as you are working on managing your anxiety.
Dr. Howard says, "Be aware of your facial expressions, the words you choose, and the intensity of the emotion you express, because kids are reading you. They're little sponges and they pick up on everything."
Explain your anxiety
While you don't want your child to witness every anxious moment you experience, you do not have to constantly suppress your emotions. It's okay—and even healthy—for children to see their parents cope with stress every now and then, but you want to explain why you reacted in the way that you did.  Let's say, for example, you lost your temper because you were worried about getting your child to school on time. Later, when things are calm, say to her: "Do you remember when I got really frustrated in the morning? I was feeling anxious because you were late for school, and the way I managed my anxiety was by yelling. But there are other ways you can manage it too. Maybe we can come up with a better way of leaving the house each morning."
Talking about anxiety in this way gives children permission to feel stress, explains Kirmayer, and sends the message that stress is manageable. "If we feel like we have to constantly protect our children from seeing us sad, or angry, or anxious, we're subtly giving our children the message that they don't have permission to feel those feelings, or express them, or manage them," she adds. "Then we're also, in a way, giving them an indication that there isn't a way to manage them when they happen."

After JD Bailey lost her temper at her daughters on their way to dance class, she made sure to explain her reaction, and then focused on moving forward. "I said, 'I'm sorry. Mom is a little stressed out because I have a lot of work going on. Let's listen to some music,' " Bailey recalls. "We cranked up the music in the car, and it changed our mood."
Make a plan:
Come up with strategies in advance for managing specific situations that trigger your stress. You may even involve your child in the plan. If, for example, you find yourself feeling anxious about getting your son ready for bed by a reasonable hour, talk to him about how you can work together to better handle this stressful transition in the future. Maybe you can come up with a plan wherein he earns points toward a privilege whenever he goes through his evening routine without protesting his bedtime.
These strategies should be used sparingly: You don't want to put the responsibility on your child to manage your anxiety if it permeates many aspects of your life. But seeing you implement a plan to curb specific anxious moments lets him know that stress can be tolerated and managed.
Know when to disengage:
If you know that a situation causes you undue stress, you might want to plan ahead to absent yourself from that situation so your children will not interpret it as unsafe. Let's say, for example, that school drop-offs fill you with separation anxiety. Eventually you want to be able to take your child to school, but if you are still in treatment, you can ask a co-parent or co-adult to handle the drop off. "You don't want to model this very worried, concerned expression upon separating from your children," says Dr. Howard. "You don't want them to think that there's anything dangerous about dropping them off at school."
In general, if you feel yourself becoming overwhelmed with anxiety in the presence of your child, try to take a break. Danielle Veith, a stay-at-home mom who blogs about her struggles with anxiety, will take some time to herself and engage in stress-relieving activities when she starts to feel acutely anxious. "I have a list of to-do-right-this-second tips for dealing with a panic, which I carry with me: take a walk, drink tea, take a bath, or just get out the door into the air," she says. "For me, it's about trusting in the fact that the anxiety will pass and just getting through until it passes."
Find a support system:
Trying to parent while struggling with your own mental health can be a challenge, but you don't have to do it alone. Rely on the people in your life who will step in when you feel overwhelmed, or even just offer words of support. Those people can be therapists, co-parents, or friends. "I am a part of an actual support group, but I also have a network of friends," says Veith. "I am open with friends about who I am, because I need to be able to call on them and ask for help. "


Of course, not all of this points are practical suggestions when dealing with Sam...I think only the first three tips might be relevant, but still a helpful article nonetheless!