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!

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!

 

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! 

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...

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

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

Gingivowotsowhoha?

On Sunday afternoon we were celebrating with chocolate ice-cream after several fairly easy-going outings with Sam recently. On Sunday evening we were catching vomit and sporting a lovely temp of 38.5°Cish, by Monday we were not eating and now had an impressive temp of 39.4°C and by yesterday we were off to Doc Paed for some answers and hopefully the hope of some sleep in the near future.

But sleep in the near future it was not going to be...bearing in mind that by "near future" I mean NOW! Seeing as it is 10:43pm and I am blogging instead of getting some sleep before Sam wakes up.

WHAT. AM. I. THINKING???

Okay that's the end of my post. Over and out!

Juuuuuust kidding :D

So Sam has a really interesting little condition known as Gingivostomatitos which has effectively caused painful ulcers all over his gums, in his mouth and in his throat. Up until a week or two ago I might have been able to pinpoint quite easily where Sam caught the virus but over the last week and a bit we probably came into contact with close to 50-60 people and several public baby-changing rooms, etc so I fear we'll never know where it came from.

Treatment involves a 3-day course of antibiotics and a 10 day course of Lovir, which is going swell as within 2 mins Sam vomited up two doses of each med leaving us with only one full dose of antibiotic left. So we're basically running on prayers right now. It reportedly takes about 7-10 days for the virus to clear up and the virus is extremely contagious which is fabulous when you're constantly being given love and smooches by a certain Gingivostomatitos-yielding lil dude. I'm so hoping it's psychological but my own mouth has a very worrying 'sting' to it this evening :(

This is pretty much how Sam's been spending his week...really quiet and subdued :(

By yesterday I noticed that Sam seemed very sensitive to light and was rubbing his eyes alot. As Gingivostomatitos can spread to the eyes and cause permanent damage to the cornea, I am keeping close watch on those baby-blues. Struggling with the brightness en route Doc Paed yesterday, I had no alternative but to offer my sunglasses to this totally cool dude :D 

To Risperdal or not to Risperdal - Part 2

So it's a funny story...well maybe not so much funny as humorous. Okay, maybe not as much humorous as WHAT.WERE. YOU. THINKING...ISH...Y(?)

Still lost with the return of our bashing-filled nights and increasing number of behaviour issues (now having added teeth-grinding to the list) I asked Doc Paed if he thought the Risperdal could be the cause of much of our issues and whether I should try weaning Sam off it. Surprisingly Doc Paed's reply started with "Perhaps the Risperdal should be upped, not stopped..."

WHAT? NO!!! A million times NO! I'm still coming to terms with the original prescribed dose and the mere fact that my 5yr old is even on an anti-psychotic medication. Mmmmm...about that 'original prescribed dose' though. You know, the one that I independently decided to decrease to the recommended dosage per weight in the always-studied pamphlet, as opposed to the dosage prescribed by the qualified, over-efficiently experienced paediatric neurologist. And which independently modified dosage was based on an almost 4kg lighter lil smurfy dude!

So, increased Sam's dose of Risperdal to what was originally prescribed and, although we've had one or two iffy hours occasionally, sleeping on the whole has improved. So mom doesn't always know best...who woulda think it!

The headslapping and irrational reaction to people moving around him remains, accompanied now with the teeth-grinding as mentioned, but they seem a little easier to tolerate when one's had some sleep xxx

To Risperdal or not to Risperdal

I think we're close to a new record here...Sam is nearing one and a half hours of non-stop bodybashing in desperation to get himself off to sleep. And the only change in this evening's routine I can pin it down to is the fact that he had his bath before his dins, instead of after as usual, thanks to our wonderfully efficient powers-that-be choosing a Sunday evening to be the headstart of loadshedding. I thought it best to give Sam his bath before the water in the geyser cooled too much as the only thing worse than Sam having his bath at a different time would be him not having it at all. So instead of the usual 30-45mins of bodybashing we're doing double time. Yay us!

Another new record and, at least a celebration-worthy one, (I think) would be that for the first time in over a week Sam pee'd in his nappy today.  He will sometimes have his morning wee in his nappy, but even then has held it in until we take him to the potty.  But aside from the occasional morning wee, we are basically just using one nappy a day which usually gets binned bone dry. Here's why there's a bit of concern regarding what would usually be a mind blowing accomplishment for a child with Sam's challenges...it seems as if Sam is now afraid to go in his nappy. So I have to make sure I take him to potty regularly otherwise he holds it in for hours. Here's how that gets even trickier...as mentioned here before, Sam does not sit on anything unfamiliar to him. And by unfamiliar I mean something that is not a very regular part of Sam's daily routine. Let me give you an example, during the week we very seldom go anywhere as a family. But over weekends we will travel as a family in Chris's car which has a kiddies chair in it but because Sam does not sit in that chair every day, each weekend's travelling is as traumatic for him as if he were being placed in that chair in that car for the very first time in his life.  The first journey or two he is so petrified that he can barely breathe and just hangs onto the sides of the seat as if he were dangling dangerously over the edge of a cliff. Eventually by  Sunday he'll chill enough to shakingly (yes, really) hold onto a book. And then it's mom's car again for 5 days and we're back to square one! So getting Sam to use a public toilet is not (and I fear, never will be) an option. On Thursday I had to run a few errands and take Sam in for a scan en route as well. We were in the car for at least 3 hours, during which time Sam drank a bottle. When we got home his nappy was completely dry! This evening he was sitting on the bed with me and all of a sudden frantically grabbed his nappy and gestured towards the bathroom. I was beyond flabbergasted...it was the first time he'd indicated to me on his own that he wanted to use the potty as opposed to me just taking him every hour on the hour. When I opened his nappy there were two or three little wet drops...he must have suddenly realised (for whatever the reason) that he needed to be doing this standing up :D

Never in my wildest dreams did I ever have imagine that Sam would not only be potty-trained by 5yrs old, but within ONE WEEK! I mean HALLO!

And certainly worthy of a second mention (especially as the first one was a Faceboast) while sitting schooling with Sam one morning, he breezed through 48 flashcards of the 50 I had presented to him for reading. One super chaffed mom here :)

Okay so onto the scan...the aim of which was to determine whether the little mass of tissue in Sam's scrotum was the died-off remains of Sam's sole surviving testicle or rather something else, leaving the question as to where that little testicle might be hiding.

So the good news is that the little sac was completely empty (good in that if it wasn't a teste it might have been something more sinister) and that our missing teste was located in the inguinal canal, alive and well, and not yet completely homeward bound to just under Sam's ribs where he and his deceased brother had originally been relocated from. Phew! We will have to attempt bringing the teste down again but seeing as Sam's grommets are hanging at odd angles from his eardrum, I'm waiting patiently for that first ear infection (should come early next year) and then we can group these two procedures together along with a thorough Glaucoma examination under anaesthesia which Sam has not had in 18 months.

And, on a bit of a sad note, I've had to chop Sam's lovely boyband style hair off! He's developed this really unsettling habit of yanking his hair out in handfuls and hitting himself aggressively on the head. At a loss of what might be causing this new behaviour and in sheer desperation to see it end, I hoped that perhaps with Summer settling in it was simply Sam's way of trying to tell me that he was getting too warm under that lovely mop of hair. Unfortunately, although the hair-yanking has obviously stopped, Sam still keeps hitting himself on the head. It is rather disturbing. Since Sam has been on the Risperdal he has developed an alarming number of bad habits and side-effects...but what a Catch 22 situation! Despite the amount of time it takes to fall asleep, Sam does definitely get more sleep than before the Risperdal. But it is still not what I would call quality sleep and is loaded with all these other new issues! What to do...what to do!

Bubble Boy

Silence is golden they say...sometimes it's just silence...bursting at the seams with so many thoughts and worries and confusion, which putting words to seems to magnify...so rather, silence :)

Silence, however, can also simply be the result of being totally preoccupied with concocting up the most creative and convincing defense arguments for the countless assault, vandalism and similar charges you are inevitably going to be delivering on behalf of your 5 year old son!!

Sam has never been crazy about people coming into his space, but as he gets older his space seems to be growing at an alarming rate (currently about a 5m radius 'bubble') and now applies to things as well as people.

If making like an ostrich and burying my head in the ground when being overwhelmed with embarrassment and awkwardness was an actual possibility, my side of the Earth would strongly resemble a giant golf ball! Whether it's the kindly old gentleman turning around in his seat at Meghan's school function to coochie-coo Sam, the lady who suddenly appeared out of nowhere to squeeze passed our snugly positioned trolley (in which Sam was a passenger) in an already sensory-abusive supermarket or the young couple who unknowingly pushed their trolley tightly up against Sam's stroller in a crowded lift...each incident was met with the same intense and hostile behaviour from Sam (not even slightly deterred by the pain he must have felt when slapping the trolley in the lift). It's mind boggling for sure how his sensory challenges just continuously change and intensify.

But, as is almost always the case, there is another matter which so overshadows our Bash-full Smurf ;)

And it's also another reason for being a little quiet, fearing that sharing might attract the usual jinxing (you know, like v-wording and being healthy). I'm hoping that 'this' has been going on long enough to be a permanent part of our lives.

For the last 10 days Sam has not only pee'd in the potty every night, but has gone THREE whole days on just one nappy, which nappy comes off dry at bathtime! Yip, I believe our little dude is well on his way to being-potty trained...how awesome is that? Of course there's a twist. Would it be Sam if there wasn't? He refuses to sit on the one-and-only big enough potty we searched endlessly for, which is making for some entertaining housekeeping when standing over the potty and not all parts are adequately aligned or little curious hands go a-wandering :D But not for a second does this dim such an awesome step from Sam xxx

Looks like the most chilled, serene little guy ever - ppffftt! LOL!

An untimely demise...

...of Sam's left testicle is suspected. You know, the testicle which (so it seemed) had made a relatively safe relocation from it's original position up yonder abdomen, unlike it's rightside counterpart which had to be evicted. I noticed a while ago that that little testicle, apparently homesick, had gone MIA. Upon closer examination yesterday, Doc Paed discovered that the empty...um...housing unit (?)...was not so empty after all as there appears to be some sort of small mass of tissue there but not the right size or consistency of a healthy testicle. We will of course confirm with a scan but it seems very likely that the lil Smurfy dude is now testicleless. Yay for hormone replacement...when the time comes, of course. Although I'd be lying if I said I'd be totally devastated at having to skip another dose of teenage hormones.

Matters of all things testicular was not the sole purpose of our visit to Doc Paed yesterday. First and foremost was the wheezy/congestion/coughing issue and then the fact that, at the time, Sam had gone 4 days without a bowel movement (and here you thought we were moving into less 'eeeeuuuuuuu' territory! ).

It's a bit of a catch 22 really. While, most of the time, Sam seems very ready from a sensory perspective to move onto more solid food, his digestive system just doesn't seem in sync. And it's about the fourth time now that we find ourselves dealing with constipation/impaction problems this year...which inevitably leads to urinating issues and what not too. So we're back to pureed foods and our good ol friend Pediasure, as well as a hugely increased dose of Movicol which already seems to be helping as we've had about 4 poops this evening. No spectacular proportions yet, but at least there's movement. Yay!

Antibiotics and some Celestamine for the throat and sinuses but I can hardly complain as Sam's had a pretty good run through winter this year. He's grommets are apparently sitting at very odd angles, no doubt working their way out but given that they were only meant to last about 12-18 mnths and it's been 15 months now, it's really quite expected.

And one of Sam's newly acquired skills is stripping, because teaching him to undress himself seemed like a good idea at the time. When I tried to get him to nap the other day (Bwaahaha...napping! A momentary lapse of reality) Sam decided to strip in protest. When he only managed to remove one layer of clothes, he stripped the bed instead. He was finding it all too amusing...until I made him pick it all up afterwards (with me being his 'walker' of course)...

Let it go...

...let it gooooooooooooo!

That's what I've told myself at least ten...twenty times this evening. But myself just isn't listening to myself.

We went to watch Meg's school concert tonight, with a little help from our friends at Iris House in the way of a respite carer for Sam.

So we're sitting there watching the Gr 1's rendition of Frozen and I think to myself "Boy, these kids are so tiny! "

Meg was tiny too.
Seven years ago.
This is Meg's last primary school concert.
This is my last primary school concert.
Sam won't have a primary school concert.
Sam won't have any concert.
I want Sam to have a concert.
I want Sam to be dancing around in an oversized Olaf costume, trying to find my face in the crowd.
I want to be cheering him on alongside the hockey field.
I want to chat animatedly about what Sam wants to be when he grows up.
I want to tease him about the little girl who smiled sweetly at him in the shops.
I want to write out birthday invitations for kids HE HAS asked to his birthday party.
I want to ground him for not doing his chores.
I want...
I want...
Sometimes I just want normal.
I hate the idea of normal...bleh!
But sometimes my heart breaks for normal.

Just sometimes...♡

Fears

Do you have any fears? The crippling kind? I do...it sounds ever-so cheesy and overdone but I have a very real fear of heights. The kind of fear of heights which had me near hysteria on a ferris wheel...despite being in my early 20's...while my 5yr old son sat calmly next to me, enjoying the sights of the festival below. The same kind of fear which prevents me from looking down lift shafts and enjoying the delights of Cape Town's most loved attractions like the cable car up to Table Mountain. 

So, if I had to imagine what it would be like to live each and every day...every hour...facing fear, I would picture myself trying to perform everyday functions while teetering on the edge of a ridiculously high cliff. And just thinking about the most simplest of activities, like walking, makes me want to cover my face and cower down. 

And that's pretty much where we're at with Sam at this moment. 

I don't usually like to post when we're going through a rough run with Sam.  I find that waiting for that moment to pass usually allows for a less emotional, more inner-reflective post...which can be quite therapeutic.  And, another big plus, makes me sound less like a whingey not-coping-that-great mom.

But this moment just ain't passing...and I fear that if I wait, we'll next catch up round about Sam's 21st birthday! And my 56th birthday....Eeeeek! I just discovered a new fear...ageing! Nah...just kidding. 

Sam experiences life at the moment cowering down, shielding himself from the world...which has become an unbearably frightening place for him, even more so than before. Sam has, and always has had, two different kinds of defensive reactions...an aversion to anxiety-triggering elements,  eg. the puking at the sound of a hairdryer. And then completely debilitating fear, eg. when you lie him down on an unfamiliar surface (say to change his nappy) and he is so afraid that he can't even breathe. These two reactions have completely switched places and while sensory aversion occurred more frequently with moments of terror only happening very occasionally when circumstances of our surroundings were beyond our control...I now get commanded by Sam to blowdry my hair every morning! And cars induce the same reaction lying down used to! 

Cars? Cars! *sigh* 

As soon as Winter showed just the subtlest of signs of letting up, we pounced on the first opportunity to commence our usual insanity-preventing evening walks a couple of weeks ago. Suddenly with every car which drove passed us, Sam covered his face with his hands, turned his body around and tried to push his body as low down into the stroller as he could manage. And so it carried on the moment Sam noticed a car approaching.  A few nights later, determined that at least Sam would get some exercise,  we took him out front to walk an extremely short distance down the road, holding our hands. With us staying in a close, we expected there to be limited traffic...which there was. Suddenly Sam turned in panic, near climbing up my leg in his desperation to be picked up. Sure enough, a hundred metres or so in front of us, was a car....a stationary car. Which had been parked there since we began our stroll! 

So...cars and walks are now out!  It's so heartbreaking to see how full of fear Sam is without having the benefit of verbal communication to be able to soothe his worries and determine exactly what feeds these struggles.  I used to pray each and every night that the Lord would lay His healing hands on Sam's brain, allowing him to master walking and speech. Recently I changed the nature of my prayer...I pray that the Holy Spirit will completely overflow within Sam...will quiet his many fears. Just days after my new petition, so intrigued with his obsession with numbers,  Sam stood holding onto the kitchen counter on his own, completely absorbed by the scrolling numbers on the microwave seemingly unaware that I had removed my support from behind him. I have hope ♡

As Sam's anxieties grow in triggers and severity, so does his intolerance of social activity.  In church this morning we sat at the back, right next to the door in case I needed to make a rushed exit for some vomit damage control.  Every time the door opened Sam threw himself into serious unmanageable extension (almost landing on the floor several times) while protesting loudly.  It was undoubtedly the most highly-strung we've seen him during the passed few weeks and having  substantial comparison,  that's a little worrying.

On a positive note, Sam has replaced his favourite play-it-till-it-induces-nausea balloon song with a fresh tune... I'll give you 3 guesses what the new favourite song is. Nope, let's make that 300 guesses because there's no way you'll get it right.  Are you ready? 

Acapella by Karmin

Yes, you read right! I know, crazy isn't it?Not as crazy as having to listen to "Nevermind...bring the beat back" after Karmin "does it in falsetto" around 20-30  times each and every day (cos that's just a whole new level of crazy there)! 

But crazy nevertheless. 

A letter...

To the Sibling of a Child with Special Needs

You’re on my heart more than you know. I know sometimes you feel like your sibling gets all the attention and I don’t notice you, but it’s not true. Entire days go by that I ache because I am so tied up in dealing with the newest symptoms, medications, and endless consultations with specialists and therapists that I don’t have time to sit down and talk with you, listen to you, like I really want to.

I see the tears you cry when a new set of symptoms means seeing another specialist, and we don’t know how many times we’ll have to travel to get to an appointment there, how many years we’ll need check-ups with that particular specialty.

I see your frustration and sadness when you witness another meltdown, are told about another surgery, or have to endure your sibling being in the hospital yet again. I see your struggle to help out when you’re asked to in situations where your dad and I aren’t around and other adults ask you to step in when they don’t know what to do.

Just let me say this:

You’re a child. You’ve had to take on far too many “adult” responsibilities and grow up way too fast already. I’m already wondering if you’ll end up being the one responsible for your sibling after your daddy and I are gone, and how you will handle that. Please enjoy being a child and let me take the burdens I can remove from your shoulders. They’re far too heavy for you. I’ve said it before, and I’ll say it again: When something happens and adults turn to you, do immediate damage control and send them to get us. You are not responsible for handling the situation alone.

You are loved more than you can imagine. I see you, I see your pain, and I see the sacrifices you make every day—to not rock the boat, to not cause us any trouble, and to help in every way possible. I love you for trying to be the “perfect” child and not cause your daddy and me more stress. Please see You’re a child. above and know that we don’t expect perfection. We don’t expect you to be able to avert every meltdown. We love you exactly as you are, mistakes and all.

I love who you’re becoming. Despite the frustration, anger, sadness, and other negative feelings you experience from time to time, I love who you’re becoming. I see your compassion, kindness, and sensitivity to others’ feelings. You are wise beyond your years. God is going to use the experiences that cause you the most pain now to continue developing character traits in you that will be invaluable to you both now and as an adult.

I love your love for your sibling. I am always amazed at how you are the first to defend your sibling when someone says something unkind. I love how you play and share life together. Although at times your hurt is deep, your love is deeper, and I am so grateful for that.

I’m sorry. For all the times you’ve felt neglected, unseen, unloved, or unwanted, I’m sorry. Please forgive me. I am making an effort to find ways to spend more alone time with you—both in little moments we can steal at home and in times we can go out together for a soft drink, meal, or to browse our favorite stores. Balancing everything gets difficult in certain seasons, and I am trying to get better at it.

You are amazing. And don’t you ever forget it.

I’m here for you. I love you every bit as much as your sibling, and I want you to know that I’m here for you too. We only get one chance at your childhood. Let’s put the mistakes of the past behind us and make the most of every moment!

Love always, Mom 

Riddle me this....

Riddle me this
Riddle me that.
Some days are peaked,
Some days are flat.

Riddle me here
Riddle me there,
Senses unclear
Best beware!

This little dude's senses. A riddle, mystery and puzzle all on their own. Exhausting.

Over the past few weeks we're very very much back to throwing up all over the show again, not in the least bit reserved for unfamiliar places but seemingly more like at any place that's not home. We were visiting a friend recently who has an old-fashioned till in her school room. Sam was already anxious just about the outing in general. Meg was messing around by the till and pressed the little button to print a till slip but there being no paper in it, it simply made a funny sound. You can probably imagine what kind of sound - not particularly sensory disturbing, well not for us anyway but definitely distressing enough for Sam to throw up.

Again we're back to a fearful, plank-like extension when I try and get Sam to walk holding my one hand or using his walker yet a few weeks ago he walked all the way from the car into the physio rooms holding just my one hand??? And here's the doozey...completely fed up with walking around with soaking wet, long hair in the middle of winter thanks to not being able to use a vomit-triggering hairdryer I decided to give my hair the chop about 2 weeks ago. Still getting used to how quickly my hair now dries, after my shower this morning I hurriedly went about getting Sam ready for his physio session and happened to catch my reflection out of the corner of my eye as I rushed about. I looked like I had run headfirst into a Van de Graaff generator!

↑ If it wasn't for the hilarious notion of being able to sit down to have a cup of (warm) tea (Oh yes please) this would have been a pretty accurate picture. 

So there was little else to do but sit Sam down in front of me (for more effective vomit-catching efficiency) and switch the hairdryer on. I first only tried about 10 seconds then stopped, expecting to see that 'I'm about to share some projectile vomiting" face. Nothing. Tried another 10 second round, then longer, and longer. Nothing! I had just started my internal whoop-whoop celebratory dance at having (finally) conquered something sensory related when it hit me. I've chopped off my hair for nothing!  

Bum! 

Luckily, Sam's sensory challenges being the chaotic labyrinth of unpredictability that they are, I will quite likely pop the hairdryer on tomorrow morning only to have him shower us all in some or other partially digested substance. Oh the anticipation! 

So other than those fabulously entertaining sensory issues, there's been nothing particularly interesting to report. We've signed Sam up for the home programme at the Chere Botha School just to have a little guidance as to what next I should be teaching him. Having mastered numbers, shapes, letters and colours some time ago I am not 100% certain where to move onto next. While Sam's physical abilities are obviously compromised, the home programme co-oordinator was very obviously impressed with Sam's intellectual strengths, especially when I showed her how I 'test' Sam by drawing several balloons in black and then write the names of the colours inside (also in black so as not to give Sam any hints) and then set all the colour crayons out next to Sam. He will, without hesitating, correctly read the name of the colour needed and select it from the lot and colour the balloon in. Fair enough his colouring skills need a little attention, but it was a very proud mommy moment for me made even sweeter knowing that it's a skill I taught him myself ♡♡♡

If I had to ask you...

...right now, on the spot...without a moment to compile a 'correct' answer...what are the five essential things all parents should teach their kids, what would you say?

To be honest? Respectful? Considerate? To love their neighbour? Humility? Generosity?...and a few other wonderful values I'm sure. Why then is there still such a struggle for respect and acceptance amongst differently-abled children and their parents? If you know the answer, please do enlighten...seriously.

No child is born with preconceived prejudices, we instil it within them through our own behaviour and the environment in which we raise our children. Let me put this to you...say you're spending the afternoon with your kiddo at the park. You approach the playground and there are two kids (roughly the same age) already playing but on apposite sides of the play area...one 'normal', the other with noticeable differences. Your kiddo is just so keen for a playmate he/she is open to either child. Be brutally honest now and ask yourself - towards which one of those children would you guide your child? And why?

No parent/s of a child/children with different or compromised abilities wants sympathy or pity. Well hopefully not...otherwise they might require a swift foot to the patoottie. In fact, they want little of anything for themselves...but for their kids they desire the world...you know...much like you do for your 'normal' kids. A world in which their children are accepted as valuable members of society, treated with respect and consideration and allowed to share in that wonderful phenomenon we call belonging.

You know why it's so heartbreaking to hear of regular occurences within our worldwide special needs community where children have been victimised, discriminated against and generally treated badly? Because we watch them struggle through challenges which are ten times, twenty times...heck, sometimes a hundred times more difficult to confront than typical kids. And then we have to watch them struggle through things which should not require any special effort at all.

Being accepted, respected and treated as a human being should be a given. It should *not* be a privilege bestowed only upon those who communicate like us, move like us, play like us and generally experience life as we do. Yet a privilege it appears to be.

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

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

xxx

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

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

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

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

We adults are the ones that do that!

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

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

6 WAYS PARENTS CAN FOSTER TOLERANCE:

Teach them love first. Be an example of loving others despite and because of their differences. Seek to help others, even if they are different than you.

Know your own values and biases.No one is without biases or values of their own. It is important to evaluate our own personal beliefs, values, and differences we struggle to tolerate. Seek to understand those things more completely.

Expose children to differences. Teach them they don’t have to agree to respect others.The best way to increase understanding is to jump in. Libraries and bookstores can take a parent and child all over the world and back to their home in an afternoon. It’s important to allow our children to explore the world and all its varieties of people, cultures, and views. This can allow a child to see your appreciation and respect for others while still allowing you to express your own views, values, and culture. It is important to note that it is not necessary to agree with or adopt all the differences we come to understand, but that we can always respect others for holding those values.

Challenge stereotypes.We do not live in a perfectly tolerant world, and there are many stereotypes and prejudices that are held and perpetuated in media, as well as in our interactions with others. It is important not to participate in jokes or other practices that foster stereotypes and degrade others. If we encounter such intolerance, parents can assertively tell their children, “That’s not true. Why don’t we learn a little more about that to better understand what is true.”

Challenge yourself. It’s easy to see things through our own personal lens. When others challenge our views or culture, it is easy to become defensive, which shuts us off to learning. It’s important to challenge personal defensiveness, and seek to see others’ point of view. Ask questions and listen before responding. Try to see things from the other person’s point of view. When children see this, they adopt this quality themselves.

Foster your child’s self-esteem.When children feel good about themselves, they don’t feel threatened by the differences of others. Children who are secure about themselves are more comfortable exploring and debating opposing views."

Let's assume...

...that the Lil Smurfy Dude has spent approximately 1800 days on this Earth and that, on average, he threw up every fourth day. That's a good average because sure there have been stretches when he would go weeks without vomiting but there have also been stretches when he would vomit two...three...sometimes four or more times every day, so it's certainly a good average. That would put us at about 450 throws up over 5 years and allocating a generous 150 throw ups to alternate landing spots, it would be fair to declare that I have been drenched in a healthy dose of eau de puke at least 300 times over the last 5 years. Three.Hundred.Times!!! Now if you are sitting (on a Saturday night of all nights) considering calculations of this nature, you know you have been puked on one (or 299) too many times.

So 300 would have to be some kind of record right? Definitely worthy of a mention in the Guinness Book of World Records? A quick chat with my pal Google advises otherwise. There was a young gent considering an attempt at being
The best at throwing up but with his regurgitation being voluntary I hardly think it's a fair comparison. An interesting article on
How to vomit without making a mess did come up...I'm going to share it with Sam...will let you know how it works out.

Now who would have expected to learn such fascinating facts on such a boring mommy blog?

Another fascinating fact...the only thing I hate more than Sam vomiting is Sam vomiting ON ME! And last Sunday's incident has so far been the most spectacular. Sam's most recent sensory overload is caused by too many people standing up suddenly around him. It happened the previous Sunday at the end of the service when I took a little longer to perch his 18kg self on my hip. Luckily quickly running out stopped the gagging just in time. Last Sunday, however, Chris and one or two other gents stood up to collect the tithes instantly causing Sam to gag. It being the beginning of the service I thought I would give it an opportunity to pass before rushing out. Not the wisest decision. After the 3rd gag I knew we were in trouble and got up to leave but it was too late...a moment later partially digested Pediasure and Futurelife exploded into my face and hair. Luckily the ground was mostly spared as the excess of the explosion was beautifully captured in the loose folds of the polo neck I was wearing.

Tomorrow we shall go accessorised with at least one marg tub and with any luck will not spend the entire service in the car.

Five things a special needs mom won't tell you

I saw this link flying by my FB newsfeed a coupla days ago Five Things A Special Needs Mom Won't Tell You and thought Oh no! Not another thousand page handbook on how to 'handle' the parent of a child with different abilities...you know, like don't blink when engaging in conversation because it could be misconstrued as blinding pity for the mother and/or child...don't lick your lips when talking as it's a derogatory action implying you think children with different abilities are lesser human beings...and all those other not-so-helpful articles which prevent, through creating a distorted idea that engaging in any interaction with the parent/s of a kiddo with DA's is bound to be super high maintenance, the one common desire we all ache for...to just be treated like N.O.R.M.A.L.

Bleh. Normal. But there I said it.

I'm still sort of contemplating the term 'special needs mom'. A couple of years ago I never would've considered myself one of the more politically correct types on this journey...hearing people use the r-word sure irked me, but not enough that I would grab the nearest piece of cardboard and go start a protest. Now?  I really could kinda see myself doing just that. In all fairness, I have used the term special needs mom/parent myself but mostly because it's probably the most 'recognised' term socially. I've experienced a few 'huh?' moments when referring to Sam as differently-abled as opposed to disabled. You can't land smack bang in the middle of England and instantly expect everyone there to communicate fluently in Afrikaans without having had any prior exposure to it, right? But a little enlightenment here and there will soon bring us all onto the same page.

So...special needs mom, hey?...certainly there are a few needs I have which might not fit 100% into the usual 'needs' box...being able to take my morning shower in a closed shower (especially now in winter...bbbrrrrrr) without rushing to beat my allocated three repeats of the balloon song (all the while keeping an eye on Sam) before he gets agitated...the need to not have to carry empty margarine/yoghurt tubs around with me...the need to successfully find accessories and equipment which can still accommodate a five year old who has not yet mastered certain skills generally acquired much younger (like potty training)...but I am not sure these needs could be considered special.

Could it be that the 'special needs' refers to the child? Hmmmm. An interesting concept and really quite possible. But still, does Sam have special needs? Or does he have the same needs as Meghan but just requires more thereof...more patience...more guidance...more care with his health...more creativity with his learning. Special implies extraordinary...being bathed in honey...carried around in style like an Egyption emperor...fed chocolate truffles at hourly intervals...all of which I can see Sam tolerating quite well. But if not special then what - Five Things More Needs Moms Won't Tell You? Doesn't quite have the same effect, does it?

I suspect a little further contemplation is required.

And what, you might ask, does any of this random gabbering have to do with the article. Absolutely nothing. It's not a bad article, go ahead and give it a read. The End xxx

Apologies for soiling your charmed life m' lady

Have I mentioned that the little dude now weighs 18kg's? That's the average weight of a 'normal' five year old kid. So the slow weight gain associated with RTS has been conquered...awesome! Well...um...mostly awesome. Just the 153cm's of mom carrying those 18kg's of awesomeness around is taking a little strain. And while most of Sam's body grows sturdy and strong, those little lower legs seem to be fading just as quickly. So walk the smurfy lil dude must.

Sam is having to re-master his walker. When he first got it, he used it the wrong way round as his fears and anxieties kicked into overdrive when encountering life so far off the ground, without any form of protective shield in front of him. To start with I was just so thrilled to have him straying from his knee-walking at least a little that I didn't consider the repercussions. But seeing that Sam was adopting more of a 'pushing' stance made me realise that he was in no way strengthening his core muscles which he needs to do if walking unassisted is ever going to be an option and also, he was in actual fact being given a false sense of security...much as a baby's walking ring would. No wasted moments though, he simply would just not have used the walker at all otherwise. Baby steps, see :)

Having grown more confident using the walker correctly around the house and at therapies, I decided it was time to hit the big, bad world! Off we went to our local Spar, the same place we tried out the 'incorrect' method. Determined to avoid all things 'normal' the first place Sam heads is....the fruit and vegetables aisle! He has a fascination with, mostly, bananas and pineapples and it is very seldom we leave a store without bananas so if ever you run out, you know where to go.

It would be fair to say that using the walker this way, which makes his dragging right foot a little more pronounced, certainly makes for an awkward-looking gait but hey, my general all round clumsiness and tendency to trip over non-existent obstacles makes me look a little awkward too. His smurfy swagger usually brings a smile from others, occasionally a pretending-not-to-stare stare and sometimes...a little more often than it should...a very purposeful look of disapproval.

Disapproval? Why so?

Because I have dared to expose our 'tragedy' to those who know nought of such things, who resent you for imprinting even just briefly upon their minds the fact that such 'imperfections' even exist.

Sound like an oversensitive mommy rant to you? Tis not! And here's why I know...as the deliverer of this disapproving look squeezed passed our awkwardness, my 13yr old daughter...usually preoccupied with watching herself doing various renditions of 50 Epic Dance Moves in the shop windows or reassuring me that she would not have jayboarded straight into that oncoming car had I not literally grabbed her by the collar...paused mid-Meghaness to note how Sam and I were both being scowled at. Like, wow, really???

Now it's fairly easy to understand why, although I see plenty fellow-journeying moms at therapies or out in force at get-togethers, I very seldom run into them in random places. It's really quite sad, don't you think? Iris House Children's Hospice gifted us all with these wonderful little 'ice breaker' cards for our kiddies...I'm going to ask them to add to Sam's, in big bold print, NOT FOR SENSITIVE VIEWERS! 

Nah...just kidding :D

Thankfully, our little 'really?' moment is completely overshadowed by more heartwarming incidents like when a friend, at the same store, has already packed herself, her family and her parcels into her car and is about to drive away when she spots your smurfy entourage across the parking lot and leaps out to hurry over and say hallo!!! A small happening to some, a meaningful heartfelt gesture to others xxx

And here's why...

...(for those who might ever have wondered) it is not a fab idea to have your overwhelmingly anxious child's dentist located in a shopping mall you frequent. Beeeeeecause...surprisingly...when three consecutive trips to said mall are purely for dental consults (the last of which ended in Meg and I discreetly trying to dispose of a margarine tub full of puke) certain smurfy lil dudes presume that every visit thereafter will involve more of the same. So it was with a touch of our own anxiety that we went off to run a few errands recently. When merely walking towards the entrance (on the completely opposite side of the mall) Sam transformed into a teeth-chattering, uncontrollably-shaking little bundle of nerves so Meg and I agreed to make it a super fast dash through the necessities, avoiding that side of the mall at all costs. How entertaining to, literally moments later, bump into.....guess who....Sam's dentist. Eeeeeeekk! After a quick exchange of niceties and firm reassurances that Sam was not, in fact, succumbing to hyperthermia we rushed through the centre like a couple of crazy loons and came out on the other end triumphant! I mean really, every puke-deprived outing is something to celebrate, right?

 

After spinal cord surgery, 2 x testicle surgeries, thumb surgery and a few ENT procedures here and there who would have imagined a dental procedure could be anywhere near as traumatic. After having our original theatre date bumped further along thanks to a doctor and his ego (not even gonna go there) which resulted in an unnecessary additional consultation (which would be the one that involved that dodgy marg tub disposal) we eventually made our way to the day hospital last week Tuesday. On the agenda was the removal of one tooth on the side which the dentist suspected might have had an abscess on it for some time, filling what ever else required it, applying sealant and then the removal of that little front, chipped tooth which was the one we were most concerned about as, having ground the tooth literally down into the gum, Sam had left nothing left to be gripped which meant the tooth literally had to be cut out of the gum. Sam was relatively calm until the moment we entered the theatre. Whether it was the absence of a pre-med, the presence of the dentist or the fact that the gas was administered at a much slower rate than usual...or a combination of all three...Sam freaked out. And by freaked out I mean he kicked, body slammed, smacked and pulled anything and everything he could make contact with. It was by far the most traumatic anaesthetic out of eight, we've ever experienced and left me feeling extremely unsettled and disorientated as I made my way back to the ward. Once the almost two-hour long procedure was over the dentist came in to advise that all had gone well. There certainly had been a nasty abscess on that one tooth which had drained once she pulled the tooth. She advised that both sets of stitches would dissolve in about 8 - 10 days and shortly after that we were on our way home. Over the next couple of days I kept a careful watch on Sam's wounds, focusing mainly on the front one where the tooth had required cutting out as it looked a little more "brutal" than I'd anticipated. On Tuesday morning I noticed that the gum where the abscess had been was very red and inflamed. I took a pic and e-mailed it to the dentist :

 

 

She felt that Sam might be having an allergic reaction to the suture and suggested I try removing the stitch. Um...sure...why not? After trying for almost an hour on Tuesday evening, I could not get Sam to stop flapping and head-rolling long enough to get hold of the stitch although he'd quite alarmingly allowed me to fiddle around in this mouth without much protesting. On Wed I took Sam off to the GP to see if she couldn't perhaps remove the stitch but once again Sam's flapping got in the way and so we made our way home with both the stitch and a prescription for an antibiotic to at least try and clear up the infection. On Wednesday evening, desperate to just put all this toothy business behind us, I lay on the bed with Sam and every couple of minutes would snip lightly at the knot and low-and-behold the darn thing came loose after a couple of tugs. Wooo Hooo! Hopefully the antibiotic successfully does it's thing and we don't have to even think about a dentist (nothing personal of course) for another six months.

 

Other than all things tooth-related, life has been low-key with the exception of a particularly exciting walk around our local pond all thanks to a psycho, stalker bee who mistook me in my violet fleece top to be a giant helping of something pollen filled and despite hysterical screeches and bee-deterring dances (much to the delight of fellow pond-visitors) lay in waiting as we completed our stroll to launch yet another farewell attack. Thankfully the random stroller parts which were hurled at it and frantic swiping and side-stepping eventually allowed us to escape. From now on, only black or grey garb shall be worn on sunny winter days when trying to remedy a bit of cabin fever with a leisurely walk. Pfffft.



One of Sam's current fads...umbrellas! We are so passed the whole "opening an umbrella indoors is bad luck" scenario :D

 

And for sure the only kid who is more fascinated by the scrolling numbers on the dvd player than the actual dvd playing.

 

It was several kinds of wonderful to get out of the house on Friday and spend some time with fellow journeying moms, made that much more appreciated by being treated to lunch by the Daniel and Friends Fund ladies, as well as each being sent home with a pack of nappies and tin of Pediasure. It being a different mall to that mall Sam was pretty chilled, despite it being over a busy lunchtime, and absolutely adored all the attention he got and precious new friends he and mom made...a truly blessed afternoon it was...

 

 

Many thanks to Marilyn, Kate and Lianie xxx