Sam. Conqueror. Overcomer.

"IN ALL THINGS WE ARE MORE THAN CONQUERORS THROUGH HIM WHO LOVES US : Samuel was born on 15th May 2009, two months early and in respiratory distress. After an initial Apgar score of 1, he was taken to the NICU and placed on a ventilator, together with an undeterminable amount of tubes, IV’s and monitors which made it almost impossible to see the little Smurfie character lying within…slightly blue and only three apples high. Sam was diagnosed within 24 hours with Rubinstein-Taybi Syndrome, a scarce medical advantage as, due to the rare occurrence of the Syndrome and the limited medical literature on it, many individuals are only diagnosed well into adulthood and some never at all. The page-long list of medical/health issues related to the syndrome, while vital in providing a prognosis and compiling a care plan, took a backseat, however, as Sam’s struggle to breathe and swallow became the primary focus of our concerns and prayers, deepened only by the heartache of not being allowed to hold and comfort him for the first ten days of his already traumatic life. After seven weeks Sam was successfully weaned from the oxygen but was still dependent on a nasal gastric tube for feeding, with which he was eventually discharged. Once home, what should have been a precious time to recover from the stress of the NICU and enjoy a relaxed and cherished time together, instead became a seemingly-endless timeline of specialist appointments, therapies, illnesses and surgeries as that page-long list of medical complexities came into play, affecting every part of Sam…physically, neurologically, medically and emotionally. Yet, despite these challenges and an “ineducable” future being predicted when his prognosis was delivered, Sam showed a delightful potential and eagerness for learning. Unfortunately though, this learning potential seemed limited to his cognitive abilities as, physically, Sam’s development lagged significantly behind that of his RTS peers. A week before his 5th birthday a brain MRI confirmed that, in addition to the RTS, Sam also has Periventricular Leukomalacia and Static Leukoencephalopathy (included under the umbrella diagnosis of Cerebral Palsy), which would more than likely have occurred as a result of the oxygen deprivation experienced leading up to and/or during his birth. Thirteen years later and with a number of surgeries and medical procedures which appear to be in fierce competition for their own “page-long list” (which surgeries and their subsequent recoveries have left Sam to face his day-to-day life with a residue of unshakeable anxieties and phobias), the boy you meet face-to-face…with his cheeky sense of humour, unfathomable joy and fierce warrior spirit…make it almost impossible to believe that that disheartening brain MRI and poor medical prognosis are of the same kid. As we begin to navigate this journey with a newly aged differently-abled teenager, leaving behind the little smurf whose fears and discomforts could so easily be remedied with a cuddle on mom’s lap, the anxiety of more surgeries and medical challenges now compounded by the universal fear of every differently-abled child’s parent/s (who will take care of their child once their own time here is gone) threatens to become overwhelming. But then the excitement of a horseriding lesson, the sheer delight of spotting a balloon (especially a hot air balloon) or a super silly giggle caused by simply hearing someone sneeze provides a beautiful reminder of the profound joy and courage these children radiate, despite their overwhelming challenges, and it provides the perfect encouragement and inspiration for facing your own. #samtheconqueror
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, June 12, 2015

Shared paths - Here's to you, my friends!

About a week ago, as notifications from our Daniel and Friends Fund Whatsapp Support Group assaulted our phones at what seemed like a message per second with topics ranging from cupcakes, to unicorns, to wine, to flooded houses, to unicorns, to family, to wine, to unicorns, to beautifully hand-made bags, to our children, to unicorns...and so on and so on, I sat back for a moment as a thought hit me...I have had more friends, more social interaction, more laughs, more inspiration, more feeling accepted in the last year than what I've probably had at any other time in my life.
 
But that's not how it's supposed to be when you have a child with special needs, is it? You're supposed to be broken, sad, withdrawn...ALONE!!! Well, for a long time that person would invade my life every now and again...would break down the wall I'd built with humour and a positive attitude to keep those very negative emotions away...and I'd have to begin all over again. So, what changed? Well, out of all those wall-breaking elements, just one thing changed...one thing which makes the world of difference to how we cope with the struggles of parenting children with special needs.
 
I WAS NO LONGER ALONE!
 
Please don't misunderstand, it's not like every family member and friend ditched us...changed their telephone numbers, moved house and the like, abandoning us and running for the hills. While there have been friends that have not made it along this path of ours, I in particular have been blessed enough to have the endless support of my family and a couple of friends who have not only stuck by my side, but who go the extra mile to show support and love.
 
That's not the "alone" I'm referring to. I'm talking about people who understand having to trade that new car for chronic meds, satellite tv for therapies, birthday parties for hospital visits, milestones for plain old health...you get the idea. Suddenly the path you've shared with old friends splits. If the friendship is meant to survive, between the two of you'll build a make-shift path in the middle which lands up being more solid and reliable than either of the other two. But sometimes it's necessary to each go your own path so for a while we feel alone. And then, when we least expect it, we walk Smack. Bang. into others walking that very same path. There's healing in a journey shared. That's just the way it is.
 
I Googled "Why is support important in special needs parenting?" Loads of posts popped up with the practical reasons - sharing experiences with medical practitioners, providing information on tried-and-tested solutions, etc. I can't even remember most of the other things. But having friends who just get it...no mention of it! Yes, all the other points have merit. But you may be super proactive in approaching intervention therapies, a Phd waiting to happen from sponging up as much information as possible, have a ten year plan in place for your kiddo's potential development, have great respite care, enough buckerooni's in the bank to pay for the medical care of ten children with special needs and yet, still, I dare say you are not being honest with yourself if you believe you can come out of this on the other side a whole person, without having had at least one person who has shared, firsthand, your hopes...your fears...your determination...your courage...your challenges.
 
Joining a support group purely for emotional reasons is not a "maybe" once you've attended to the really important stuff. It's a "have to" if you are wanting to tackle the really important stuff with a healthy mind and heart. Truth. xxx
 
 
 
 
 
 

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 all...as 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'...um, 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 do...so 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. "

xxx

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!

Tuesday, April 28, 2015

Fight-Flight 101

An interesting bit of info I read recently is that Risperdal can heighten anxiety issues. Very interesting. Especially as I sit here on a daily, sometimes hourly, basis trying to figure out where all these extra anxieties have come from. Now it's no secret that I am not Risperdal's No.1 fan, almost instantly Sam became over-emotional and insatiably hungry. But I figured a little sporadic sobbing and healthy appetite was a small price to pay if there was noticeable improvement in other areas, like sleeping and social behaviour. The thing is, there's been no noticeable improvement in those areas so at this stage the negatives are outweighing the positives. I am still cautious about taking Sam off the Risperdal though, so have opted for the most conservative weaning process which is decreasing his dose by 10% every 3-4 weeks which effectively means that Sam will only be Risperdal-free at the end of June. 

Trying to figure a way forward with Sam's social development has made me realise that we do not give Sam's anxiety issues enough credit for the role they play in his social interaction. Sam comes from at least two generations of severe anxiety sufferers (a story for another day but, yes, genetics do play a role in anxiety disorders), compounded by an under-developed nervous system from being born prem and needing the many medical procedures his special needs required with only this under-developed sensory base to comfort and stabilise him. I am an adult with a fully-functioning cognitive system (well most of the time) from which to draw the rationale which would help me process all the 'trauma' in my life, like surgeries, etc and yet still I can quite comfortably say that I'd be close to a nervous wreck having dealt with some of the challenges Sam has. 

HOW TO RECOGNISE ANXIETY IN CHILDREN WITH SPECIAL NEEDS

Fear is a normal part of childhood. But for many kids with special needs–kids who’ve experienced scary medical procedures, separation from their parents, constant pain, and other situations they shouldn’t have to endure–anxiety can become debilitating or lead to post-traumatic stress disorder (PTSD). When it does, parents and other caring adults need to step in and help them find treatment.

5 Symptoms of Anxiety in Kids

But how can we know when ordinary childhood fear has morphed into debilitating anxiety? A post at Lending Hand Resources lists the following 5 symptoms.

Your child doesn’t want to leave the house. To the point where they avoid it or display fear and sadness when forced to leave.
Your child is always angry. Anxious children are angry because they feel trapped.
Your child is always sick. Anxious kids fear the worst. So they over react to the slightest headache or heart flutter.
Your child sweats constantly. This is a natural physical reaction for kids who are always ready for flight or fright.
Your child can’t sleep. Anxiety leads to racing thoughts. And who can sleep with all that head noise?

 The entire article can be found at Is Your Child Suffering from Anxiety? Five Symptoms to Look For.

Just one of the more basic articles on anxiety, but still significant in identifying many of our issues with Sam. 

The first major step is a change is mindset, from my side. I have lived most of my life with anxiety and on more than one occasion needed medication to help me cope, so one would think I would automatically have this built-in alarm system which would perfectly guide me to a more tranquil little dude, right? Wrong! Sometimes my desire to see Sam enjoying something 'normal' overides my judgement, like yesterday afternoon. We took a drive to the waterfront, not anticipating how frightfully busy it was going to be. Meg and Chris were inside the mall trying to find something to drink but the noise levels were unbearable in there so I pushed Sam outside for a few mins of as-close-as-we'd-get to some quiet. I'd barely got outside when Sam spotted the Big Wheel which, thanks to Mr Tumble, he gestured excitedly at and signed "big wheel". Mommy brain cheered "Yay! Sam likes!" and instantly pushed Sam closer while sensory-cautious brain lay trampled on the ground. 

I have told so many people so many times that Sam likes everything from a distance, I don't know what I was thinking by pushing him closer to the Big Wheel, especially as it meant dealing with the extra noise from all the outside eateries.  50 metres from the wheel and smack bang in the middle of all the folks enjoying their meals Sam went into screech-overload, ironingboard-mode! Chris calls it surfboard-mode, go figure ¶: Either way, you're dealing with a 20kg kid who is in full startle extension, screeching at a pitch that would put a fire engine's siren to shame. In hindsight, it must have been pretty darn entertaining...153cm high, stress-relief smoothie (of all things) yielding woman trying to remove said panic-stricken dude from pushchair...with one hand nevertheless. It was by far our most traumatic social meltdown EVER! And this without vomit even. Me thinks we'll do the hermit thing again this week. No wait, what am I saying...Meg has a soccer match tomorrow. Oh my fragile heart. 

And in other, nowhere near as exciting news... 


Sam lost his first tooth..literally. He swswallowed it during his 7-minute nap and it has never been seen again ;) I was quite surprised that the tooth fell out at such a 'normal' age seeing as he only got his first tooth at 13mnths.  The new tooth is coming out behind his other teeth though so it looks as though a visit to a Macro Craniofacial Surgeon is on the cards soon. Also Sam's relentless teeth-grinding means that another tooth has been virtually ground down into the gum #sigh



Doing our blue bit for World Autism Day


Aha...a possibility for tomorrow's soccer match. Our most successful hockey tournament by far...lots of PT setting the trailer up but Sam was pretty comfortable and even made a new friend :) 


And just looking super impressed with the personalised top Ouma made xxx

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....

Sunday, March 29, 2015

The unchanging....

If I had a Rand for every person who's ever told me how great it is that I can remain lighthearted about most of our challenges, I'd have...well a handful of Rands...enough to buy a lottery ticket and put me in the runnings to become a MILLIONAIRE! (As long as "millionaire"'s somewhere in that equation, right?) Usually I laugh and say "Well, if I don't laugh, I'll cry...and if I start crying, I'm not sure I'd stop" and then we laugh some more.

Few realise how completely honest I am being.

Some days I just can't muster the energy to fake okay. Today is one of those days.

Sam has many issues relating to his RTS, Cerebral Palsy and Autism. Some are pretty straightforward...reflux, constipation, etc...some are more serious...apnoea, physical abnormalities, odd seizures, etc. I can live fairly peacefully with almost all of these and the care they require. They are all tangible issues...things I can feel or see or smell or hear.  They are all fairly common issues too, maybe not always effecting one person at the same time, but isolated they are all issues that when discussed with someone else they are easily recognised and relatively easy to treat, whether it's upping Movicol, reducing fluids before bed, sleeping on a wedge, having regular physiotherapy - they are mostly tangible problems with tangible solutions.

They are the easiest part of our journey.

And the hard part? The hard part is something that cannot be seen or heard or felt or smelled. If you sent Sam for an MRI/scan/scope it would not show up like a tethered spinal cord or malfunctioning oesophagul valve or thickened bowel wall or funky airways or Periventricular Leukomalacia or any of the other things responsible for the above ailments.

FEAR!

Irrational, uncontrollable, all-consuming, life-draining FEAR!

You just cannot begin to imagine what sort of fears a 5 year old could possibly have that might be anywhere near as debilitating as what I'm trying to imply. Let me blog you through our last 36hrs....

After averaging yet another night of only 3-4 hrs sleep, Sam woke grumpy, with a grumbling tummy due to his growing aversion to anything remotely resembling food and the sight of his dad in bed next to him. Yes, sounds like a harsh statement for me to make but Sam knows that Dad not going off to work means weekend which in turn means a change to his daily routine. Pediasure bottle made and handed to shaking hands - Sam has a fear of liquid moving, whether it's waves at the beach, water from a sprinkler, water poured over him in the bath or, as in this instance, milk swishing about in his bottle. It takes him a good few minutes to build up enough courage to put the swishing milk to his lips, almost choking as his shaking prevents him from swallowing calmly. Still, it's an accomplishment as sometimes fear trumps hunger and the bottle goes flying to the floor as if it might cause him physical harm. Fear 0 : Sam 1

Once we're all showered and dressed, off to the kitchen to prepare Sam's porridge. Throwing good parenting skills out the window, I put Sam in front of the TV with his favourite show hoping it will distract him enough to at least tolerate a few spoonfuls. Fail. The second I bring the bowl in he starts gagging. Fear 1 : Sam 1

Dad leaves to drop his car off at service garage. Needing to follow shortly so that I can collect Dad and we can go to shops, I opt for another Pediasure bottle. Sam spots bottle entering the room, gags and throws up what's left of the previous bottle. Fear 2 : Sam 1. Off to fetch dad and brace month-end shoppers on an empty stomach. Or so I thought.

Arrive at service place, walk into dimly-lit garage to see how it's going with car. Sam starts gagging. Mom does not panic as there can be precious little left in the kid's stomach. Wrong! Sam showers the parking lot and mom with a surprising amount of fermenting Pediasure. Fear 3 : Sam 1

Back home to shower and de-puke. Survived a thankfully uneventful shopping trip for nappies and Pediasure. Once home and after yet another food-sighting-induced-gag-session, Sam manages about 5 spoons of mashed potatoes and 120mls of Pediasure. Desperate to have this small helping actually digested, remain at home. Another night of restless, body-bashing follows.

Sam wakes a little more cheerful this morning until his bottle is placed in his hands. More gagging, but luckily this time puke-less.  Same story as yesterday when porridge bowl is spotted. Surrender and head off once again to supermarket for the rest of the family's needs. Barely in shop a few minutes when employee decides to remove the strip which keeps the prices in place on the shelves. The 'ripping' noise sends Sam into instant gagging mode and over the next few minutes, Sam empties his entire stomach's contents (?) all over the trolley, shop floor and himself. Mom flees with vomit-saturated kid and scarlet-faced teenager, leaving Dad to finish the shopping. Back home for bath and de-puking. Before heading back to shop to collect Dad, Mom swings by local church to collect two generously gifted items for her new playgroup. Upon pulling into the unfamiliar parking lot and choosing to park right in front of the open doors, a motherload of Pediasure is projected from Sam's stomach. Sam, carseat and car's seat all drenched. Phone Dad to advise we are headed home first for de-puking. Once Dad and groceries have been collected, retreat to our cave giving up (once again) on the Sunday afternoon family outing.

Washing machine works overtime for the remainder of the day, family members tiptoe around with their own food to avoid further gagging and eventually, after a mere 320mls of Pediasure for a straight 24hr period, Sam falls asleep exhausted from a day filled with unexplainably frightening things.

Mom sits next to him on the bed, listening to his grumbling tummy and shushing him when he whimpers in his sleep, feeling helpless and lost about how to help him. Is it possible to avoid all the things that cause her 5 year old so much anxiety? Yes, of course...but it means never leaving home. She wipes the tears from her cheeks as she reminds herself that no-one gets this part of Sam...of their lives, especially the doctors and specialists...and realises that until someone does, it can't ever change.

FEAR 54785588 : MOM 0

Monday, March 9, 2015

Celebrate Rare Disease Day? Yes please.

Oooooohhhh...that word again! And I don't mean the "r" word, which has recently also had its annual "Spread-the-word-to-end-the-word" Awareness Day. Nope, my views on the r-word are so sophisticated and insightful that I dare not share it here. Oh, what the heck. Here it is...
 
If you use the r-word in an even-remotely derogatory manner - you are a jackass!
 
Yip, that's about it really. I mean seriously, it's been ages since I've even heard a doctor use the word retard/retarded in a medical context.
 
I am actually referring to the word "Disease" which accompanies the annual awareness day for rare diseases. To be completely honest, I don't personally view Rubinstein-Taybi Syndrome as a disease or my child, who is effected by RTS, as being sickly. But firstly, many of the conditions related to RTS could well be classified as a disease and secondly, and most importantly, the occasion is not actually focussed on "disease" but rather on "rare". Had I been the one to take the initiative, to do the ground work to make the 28th of February an official awareness day, to spend days...weeks...months prior to the 28th February marketing and sharing the importance of having such an awareness day then sure, I might certainly have called it Rare Condition Day or something similar. But it was not me doing all the effort from behind the scenes, so instead of criticising a mere discrepancy with regards to terminology, I choose instead to ride on the wave of awareness to enlighten others about the syndrome which effects my son. 
 
Just as a bit of useless info though...the definition of disease :
 
"A disorder of structure or function in a human, animal or plant, especially one that produces specific symptoms or that affects a specific location and is not simply a direct result of physical injury"
 
To learn more about Rubinstein-Taybi Syndrome, please visit the official Rubinstein-Taybi Syndrome Website
 
To celebrate Rare Disease Day this year, we joined the Daniel and Friends Fund for a super, fun-filled morning...
 
 



Tuesday, February 24, 2015

Lost in Translation

Perhaps a more accurate heading would be "Lost in Interpretation" but it doesn't quite grab one the same, does it?

Either way, the way Sam interprets information sure is fascinating. When I was sort of groping around for behaviour guidance, I introduced a naughty chair as a means of discipline. And then loaded a pic of it onto the iPad together with the other items relevant to Sam's life, as well as to all those beautifully professional hand-drawn books Sam has a habit of dragging out of the woodwork...particularly when we're going out in public. Next to the naughty chair was a little poster displaying which possible actions would have landed that smurfy little posterior in the chair and what the acceptable alternatives would have been, eg. smacking vs soft touch.

Well no sooner had I added them when I had to remove all the pics because Sam would be happily flicking through them, minding his own business, until a pic of that darn naughty chair popped up. Then instantly his hand would go out and slap whoever was within range...slapping meant naughty chair and naughty chair meant slapping.

By now it's become common practice (with all children) to reinforce positive behaviour as opposed to focalising negative behaviour, eg. don't throw vs please put down softly. Sounds pretty simple, doesn't it? Except when the 16yrs of parenting prior to needing a more attentive approach to a child with communication challenges was filled with "No's" and "Don'ts", those allegedly-detrimental statements always seem to run a kickbutt race to the finish line that is my mouth! #thehorror

The other problem of course is the very simple fact that, when finished with something, the more natural process seems to be to throw it down instead of putting it down, well for Sam anyhow and, from what I can remember, a few of Sam's RTS siblings have/had a tendency to do the same. For this reason, I very seldom take the iPad with in the car and, on the odd occasion I do, it is only when there will be someone sitting next to Sam at the back. Up until last Friday that is.

About to leave home for a particularly long wait outside Meg's school, I passed the iPad on the table just as I was wondering how I was going to keep Sam occupied in the warm car. A quick back-and-forth of "Should I, shouldn't I" ensued and before I knew it, Sam was in his carseat and being handed the iPad.

DO NOT SAY "DON'T THROW!"
DO NOT SAY "DON'T THROW!"
DO NOT SAY "DON'T THROW!"

"Sam, when you are finished with the iPad, ta for Mommy"

"DO.NOT.THROW.THE.IPAD!"

WHAT??? WHO SAID THAT???

Well, before I had the chance to pounce on the sneaky scoundrel who'd dared utter those words (in a remarkably similar voice to mine, I might add) , the iPad was out the still open door and hitting the cement floor with a stomach-curdling CRACK!

Mom's reflexes    :  0
iPad repair place :  3

There very nearly wasn't a 3rd round for the iPad repair place with more pressing issues needing attention, but Sam's granny came to his rescue by offering to see to the costs. And, with today been the fourth day without his electronic appendage, frustration and lack of understanding why he could not have his iPad, reached an almost unbearable high and saw me getting walloped on the forehead with a wooden hammer during occupational therapy.

Mom's reflexes   : 0
Bump on noggin : 1

Hmmmmm...perhaps it is I who is lost in translation!

Tuesday, February 17, 2015

The Do's and Don'ts of interacting with parents of children with special needs?

Over the years I've often read articles offering guidelines (?) on all the Do's and Don'ts one needs to keep in mind when interacting with parents of children who have special needs. In the beginning I would read through the points, thinking to myself that it was an article I may as well have written myself, it was THAT relative, softly rebutting folks who stare and then in turn, rebutting those who didn't look...who offer the "God only gives special kids to special parents" and so on and so on. But as time went on, I found myself vacaying on the fence for a while, seldom actually opening the links I found zooming passed on my timeline. Then, as the articles seemed to be posted more and more frequently, I worried that I might be missing something new so turned to reading through them again but now find myself becoming concerned that we, as parents who quite often fear becoming isolated from society due to our children's differences and challenges, are making ourselves almost unapproachable by constantly advocating these fairly uncompromising "rules" others need to adhere to when our paths happened to cross.
 
It goes without saying that certain things do remain an absolute no-no...judging another's walk when you know nothing of their journey is never okay and all the ad-hocs that go with that sentiment...disapproval or scorn in any shape or form is malicious to anyone, whether effected by disability or not. I think parents of children with special needs just have a supersonic radar that picks up more easily the possible "starers"and "scorners" so we are more aware of them. Within seconds of entering any social setting, be it 10 people or 100, I have identified our "critics" and found myself migrating to those who seem more less taken aback by the flapping , often screeching-in-protest little guy leading our flustered convoy. 
 
The very first official day of Meg's high school career saw me heading to a very long queue at the school's financial office, this after waiting in the parking lot for 
at least a half hour first. By the time we joined the back end of the line, Sam was on 99% FULLBLOWN MELTDOWN...with the only element stopping us from that extra 1% being the already-threatening vomit. Just to make it that little bit more exciting, no sooner had the wheels of his pushchair reached a stop when a gentleman carrying out some DIY chores started up on his drill, about 2 metres away! There were easily 10-15 ladies surrounding us and do you know how many stared on in obvious disapproval? Just one! And the rest? The rest of the women instantly jumped on board, two staff members asked others if we could be moved to the front of the queue and requested the contractor to quiet his drill until they advised him all was okay and the mom who had given us a place upfront tried to distract Sam, along with another two moms, while I made my payment. Imagine where I'd have been if all those involved had first had to mentally tick a checklist of what to do and not to do! I'd have been sweeping up loads of semi-digested bananas and yoghurt with wetwipes while they still pondered No. 2 on the list. 

So many times I've heard the saying "It takes a village to raise a child" and it most certainly does, that afternoon was a wonderful reminder of just that ...so you need to make sure you're part of that village too by being approachable (how else will others learn?) and (and this is the hard one) by being forgiving. There are always going to be those ignorant few whose inconsiderate stares and uncalled for remarks will break you down...just a little. But there are so many more who make up for these imbeciles' poor behaviour! JUST KIDDING! #winkwink 

Seriously, I'd be near devastated to find out that a fear of offending, instigated by all these Do's and Don'ts floating around, had preventated someone from offering a smile, striking up a conversation...becoming a part of our village. 

Just for interest's sake, this was the most recent Dreaded Statements List wafting on the web : 

1. Wow! You must be so busy? 
2. I'm sorry. 
3. You're lucky you have a normal kid too. 
4. He'll catch up. 
5. You should take care of yourself so you can take care of him. 
6. We're only given what we can handle. 
7. Have you tried... 
8. Kids aren't really autistic, they just need discipline. 
9. What's wrong with him? 

Sure, No's 8 and most definitely 9 might elicit a somewhat sarcastic remark from myself (I've already thought of at least 5 fab comebacks for No. 9), but I've never had anyone say anything of the sort to us. Go figure! 

Aaaaand in other Smurfy News...we've had a one-on-one session with the lady who runs the SNAP Academy, which has been a bit of a saving grace, and we're looking forward to another session this weekend. I'm still way out of my depth with the Autism thing and needed someone to guide me as to when to indulge Sam's sensory/anxiety issues and when to stand firm. Having a clear protocol to follow sure does provide a bit of confidence when it comes to going out with Sam. And we've also introduced some chores into Sam's life like washing dishes, picking up toys, etc. (all with the necessary support of course). 

While we were on a roll trying new things, I thought it a good time to introduce Sam to a sippy cup. I couldn't have been more horribly wrong!!! You cannot imagine the amount of vomit this seemingly-unremarkable item caused in our home...simply by its presence on the kitchen counter. 


 



For the first time last week I noticed Sam engaging in a little imaginative play and playing independently (he usually requires constant interaction) 



And just for the sake of ADORABLE!
 

Tuesday, January 27, 2015

Courage and Hope

While writing my last blog post, I had to drench up every last scrap of self restraint to keep from sharing that, as at that date, we'd had 6 full night's of uninterinterrupted sleep! SIX NIGHTS! HALLO!  And of course, this blog being abundant with jinxability made me wary of saying anything until enough time had passed to make the issue 'safe'...like say maybe six or seven....months.But come the 13th I was bursting to tell somebody. Celebratory-worthy matters are hard to come by lately so to have to keep one under wraps for so long was killing me. And boy did I share...with anyone who was willing to listen...and even those who weren't. And what do you think happened?



Yip! It was back to 3-4hrs of bodybashing each and every night. By midway last week I was too scared to get behind the wheel of a car. Managing an average of about 2 hrs interrupted sleep each night was not making for fabulous judgement calls. And of course when there's no sleep, already fragile behaviour becomes even more volatile. And what better place to put this thoroughly entertaining behaviour on display than at your big sister's brand new high school and the very many events which have required attendance. Yikes! There were more narrowly-escaped projectile moments in the last week than in the whole of last year.  So of course, we retreat into our safe haven and watch wistfully from the windows at those going about life.  


I have the utmost respect for parents who have the courage to ignore the stares, dismiss the judgements and just continue going out and living life despite the challenges brought into the mix by Autism. I have yet to find that courage. Right now every inch of me wants to simply keep Sam in our safe place where he is comfortable and protected from opinions which might overlook the awesome little person he is because of not being able to see passed the challenges brought on by sensory/anxiety overload. 

Thankfully, an appointment which was meant to have happened last year but got postponed due to Sam's Gingivostomatitis, happened yesterday afternoon. It could not have come at a better and more much-needed time. For now I am going to make the most of the sleeping smurf beside me but can tell you that

THERE. 
IS. 
HOPE! 

Sunday, January 11, 2015

I had a dream...

...or would that be, I have a dream!

Up until the wee hours of this morning I always thought that, should we find ourselves blessed with just one miracle, I would most definitely want that miracle to be speech, more so than walking...although it certainly is a struggle to have to determine which of the two would really impact ours, but mostly Sam's, quality of life the most.

It seems my heart knows though...I had a dream this morning shortly before waking up, we were at some sort of eatery, Sam and I watching the children play on the grassed area below from a patio. The children were 'zooming' around, pretending to be aeroplanes while a cinema-style big screen on the border of the play area showed movies. Sam stood next to me, clutching desperately to my hand for support and stability, as he does now. He gestured towards the play area and I slowly guided him towards the steps, which he navigated awkwardly. But once on that playground Sam started trying to walk faster and faster, straining against my hesitance to let go of his hand. I urged him over and over to wait, reminding him that he couldn't walk. Suddenly he pulled free of my hand and started running, arms outstretched in aeroplane-style. I just fell to the ground in complete and utter awe, watched him run two wide circles and then flop down on his back laughing with delight, as kids do.

The moment was exquisite...there's no other way to describe it. I've dreamt before that Sam could speak and that was super exciting...but this was something else, just pure, raw, overwhelming joy.

It is a dream I will cherish forever, or hopefully just until it becomes a reality...

Sunday, January 4, 2015

A seriously bad case of Festivalisophobia

I remember Sam being "ill" last Christmas but could only recall that we were doing large volumes of v-wording, without remembering the original cause. A quick search on the blog and there it was...a genuine case of same procedure as last year! No real illness, no nasty little bug flooring an otherwise eager-to-celebrate little dude...just a sensory/anxiety system in absolute turmoil at all the change to the usual, thrived-upon routine and a generous dose of Festivalisophobia (fear of Christmas). Not that we've exactly been partying it up, just attempted a low-key trip to a local botanical garden and a quick drive to the seaside, both which resulted in an epic fail. It's like the kid somehow senses that everything's a little busier, little noisier, a little crazier out there and his defensiveness goes into overdrive just thinking about it...and Sam+stress/anxiety=vomit...and lots of it! (Eeeeeewww, yes I know, totally gross). On Thursday I had a brief moment of excitement when a quick temp check showed a lowgrade fever but unfortunately it must have been purely a momentary strain on his system as another check minutes later showed a normal (well for Sam anyhow) temp again. As wharped as it may seem to be wishing your child ill, a simple once-off virus seemed easier to brave than a possibly recurring phobia of all things Christmas. Thankfully common sense set in (not a regular happening, I'll have you know) and after giving myself a mental slap through the face, I reprimanded myself for even entertaining the notion, be it just for a second, that having a poorly, feverish Sam would be better than simple, non-illness related vomit.

In all fairness, sleep deprivation can mar one's judgement and with the exception of one good night's rest last Thursday evening, Sam and I are both running on an average of about 2-3 hrs sleep a night. I kid you not! And that too was happening this time last year, Sam bodybashing himself so severely for hours on end that I eventually have to place pillows around him to prevent him from bruising himself with the incredibly forceful way with which he throws his little body around. The good thing about reminding myself that we did all this last year, is the reassurance that we will move passed all of this once everything returns to normal again. Normal? Bwaaahaha! I crack myself up sometimes!

We did have one truly awesome highlight to our festive season and it was THAT great that it by far overshadows all the not-so-great stuff. I have been corresponding for some time with an RTS mom who lives in another province with her family and their precious little 'Aines who is 4yrs old and also effected by Rubinstein-Taybi Syndrome. Little 'Aines and her family were holidaying in Cape Town and we had the privilege of spending the better part of one day with them. It was wonderful seeing all the similarities between Sam and 'Aines, although 'Aines is a perfectly-behaved little angel while Sam was in full fight-or-flight, arm-swinging-helicopter-style mode (Ai).

As at this very moment, we are about 36 hours vomit-free so lets just hope that we've seen the last of it for a while now. Being able to get out the house a little more often sure would be great too...so here's hoping xxx

Sunday, December 21, 2014

Same procedure as last year...

...Same procedure as every year, James :D 

Oh I did love me some Dinner for One on New Year's Eve. Back in the daexhausted PVR's and the like were around, we'd recortook on the ol' VHS cassettes and wSerioush happy er and over until we thought we couldn't bear to ever see it again...and then Christmas came around again and you found yourself keeping an eye out for it on New Year's Eve . Of course I wouldn't know if it's been aired at all over the last five years because that would require something of a scheduled twenty minute 'downtime' which is really little more than a hilarious joke here in Smurfville. 

And I did find myself thinking of that "same procedure as every year, James" as we prepped for our Stilbaai trip this year. ..with me being the tipsy, slurring, lion-hopping, vase-drinking, heel-clicking James (unfortunately all due to sleep deprivation as opposed to alcohol) and Sam being the poker-face Miss Spohie, seemingly unaware of the havoc she was causing. Without fail, Sam manages to come down with something every December and, with the exception of last year, has us preparing to cancel our visit with the family at the last minute. It usually happens round the 19/20th when his paed is just going or already has gone on leave, just for that extra bit of drama. This year we thought we were being super sneaky by leaving for Stilbaai on the 13th already #nodssmugly And I decided that no matter what, there wouldn't even be talk of not going - with a nebuliser and mini-pharmacy already checklisted (including cortisone and antibiotics) I was confident we could handle whatever ailment came our way this year. 

And then Gingivostomatitos came along and I was like REALLY? Super contagious viruses are not generally the most welcome Christmas gifts to bestow upon family. So, as per my last post, off we went to paed and came home with antibiotics, anti-viral meds and a healthy dose of self-loathing fuelled by my decision to stop Sam's maintenance antibiotic to test whether his immune system had shaped up a bit (which result obviously came back with a big, fat FAIL!) The day after our paed consult Sam's temp was still sky high and he just couldn't keep anything down, despite Motilium and Zofran Wafers which are usually super potent. By the following day, worried about Sam becoming dehydrated, I  made an appointment with our GP after failing to get an appt with Sam's paed. I briefed Dr GP on our paed's consult two days earlier and then, after two extremely thorough examinations, braced myself for what Dr GP had discovered was worsening Sam's condition. And what he found was...NOTHING!  Absolutely NADA!  He said both Sam's mouth and throat were completely clear. After been told that it takes a good 7-10 days for Gingivostomatitos to clear up, I asked Dr GP if it was possible Sam's could have cleared up in just 48 hrs - he said perhaps we'd caught the virus in such an early stage that the meds had sort of halted it in its tracks but in his medical opinion, that was highly unlikely. What he did feel was certainly likely was that, with no evidence of a virus which needed treating, the antiviral meds were responsible for Sam's upset system. 

Sam's temp eased up on its own a day or two later and after the usual sensory aftermath which follows any vomit-filled illness and a little oesophagul valve which also requires some time to settle, we were definitely still on course for our trip. We still don't really know how the ulcers disappeared so quickly from Sam's mouth and throat but do know that we trust both Sam's paed and our GP's judgement and so, with Sam having been the focus of many a prayer over those couple of days, can look only to divine intervention as his saving grace :) 

And so off to the "seaside" we went! When you ask Sam where Ouma and Oupa live, he signs "seaside". Sam loves the idea of the seaside but the actual seaside petrifies him. Meg had a beach party a week or two back but Sam was so traumatised by the sound and view of the waves that we had to block his sight from the ocean the whole time we were there. Thankfully Stilbaai has not only the ocean, but a lovely clear and shallow-banked river which runs right through it. With the added benefit of no wave-sounds, Sam was hooked and the second we moved towards the front door at any time during the day, he signed "seaside". The first day he was a little cautious although tolerated his feet on the sand like a pro. By the second day he couldn't wait to hit the water and on day 3 marched straight in till he was hip-high in water. What a treat to see Sam enjoying himself so much xxx


The 4hr trip there was unfortunately a little less of a treat ;) 



Mother Christmas popped in on Sat evening to ease Santa's heavy load for Christmas Eve. 


Sam was a little wary but couldn't resist Mother Christmas's gentle charm



Sam's super sensitive eyes took some strain so he had to borrow Meg's shades for a while 


Chilling in Ouma's chair




This was within 2 minutes of hitting the water. Just moments later we had a water-logged nappy on our hands and a little smurf so exhausted from all the flapping around that he passed out for a snooze on mom's lap.  Seriously happy moments xxx