TEETH, FEET AND A FIRST EVER SCHOOL CONCERT GONE SMURF-SHAPED

Woo Hoo! A blog post! This is like, what...my sixth one for the year! Really quite pitiful, if I do say so myself, especially as there are so very many things going on in the Lil Flappy Dude's life that I could probably easily blog every day. 

Where should we start....let's start with some of the not-so-fabulous stuff and, as always, end off with the good stuff. 

Teeth! Teeth? Yes, really...teeth. Of all the issues we'd prepared to deal with when Sam was diagnosed with Rubinstein-Taybi Syndrome I not once expected TEETH to be such an issue.  What the doc should have said when giving us the low-down on RTS was "Child will have walking issues, feeding issues, breathing issues, sensory issues, spinal cord issues, testicle issues, speech issues, orthopaedic issues, digestive issues BUT out of ALL OF THOSE issues....the one which will challenge you the most is TEETH!!" Okay, I'm being a little melodramatic...which is completely out of character...but still.  So we were nearing the end of the three months we had to wait to see what that little talon cusp was going to do and were thankful that the area around the talon cusp had seemed to settle (after lots of infection and inflammation) when a couple of weeks ago Sam started refusing to eat and drink again.  I thought it was just another round of irritation so had a look inside Sam's mouth and was not too happy to see another talon cusp coming through.  Another three-month wait here we come.  With (I think) most of the Rubinstein-Taybi kiddos having developed talon cusps, the issue itself is not anywhere close to being considered medically "serious" or anything like that, but it's all the spin-offs from this "small" issue which are really quite frustrating. 

As always, Sam's first line of defence is to throw some hectic oral sensory aversion at me and refuse to eat or drink...a little annoying but, oh, we've done our time with this stunt and it eventually comes right.  The more worrying problem is that he steps his teeth-grinding up a level or ten.  We've already had to cut the remains of one ground-down tooth out of his gum which caused the subsequent adult tooth to come out sort of in the front of the gum as opposed to out the bottom of the gum because it could not break through the area which had been stitched closed after the procedure.  Now, with there being more irritation in his mouth, Sam has managed to completely grind down yet another tooth into the gum and has another two, mere days away from going the same way.  I get that Sam's REALLY into doing things a little different (because after all DIFFERENT IS COOL!) and I'm really into embracing all that funky difference. But every now and again maybe doing one or two things in the normal way...like just having your teeth come through the right spot in the gum...would be quite fab. 

Funny story though...when we were done with our most recent sensory-instigated fast, the lil dude decided that he was done with pureed foods. Yay!! Of course, we've been here before, but this time it really is looking promising.  We last had pureed food a little more than a week ago ("we"?...because I make a habit of eating pureed food?) and have done really great with sliced beef and chicken, just the minced meat remains a very expressive no-no.  So the meat might have been cut up really small. Like REALLY small...like to about what I'd imagine an ant's portion would be. But still, progress is progress so it most definitely counts.  Only time will tell how long we will be doing ant portions of food though because Sam's sensory issues and digestive issues are not usually keen on parallel progress...but here's hoping!

Random funny story...Sam watches a bit of tv in the morning when he wakes up so that I can try get all the morning tasks seen to.  If Sam has not woken up by a certain time, I usually put a movie on (always Teletubbies Bedtime where Alex sings "Wake up sleepy head"...pretty cute hey?) quite loudly, but on the odd occasion that Sam wakes up before that, he sticks his hands out from under the blanket and before even opening his eyes will sign whichever movie he wants to watch...and it's never Teletubbies Bedtime. You sort of have to see it to appreciate it, but basically he'll be lying dead still (which generally only happens from about 5am onwards) and all of a sudden two little hands will frantically pop up and sign the desired dvd in an exaggerated and very cheeky way...which is so odd, because our lil flappy dude is NEVER cheeky (*exaggerated eyeroll).

Seeing as we're currently into all things -free (puree-free...sleep-free) we decided to have another shot at nappy-free...or as close to that as we can get.  WARNING : POTTY-TALK TO FOLLOW! Previous attempts have been a bit tricky.  While you can get Sam to pee on demand, he doesn't quite seem to grasp the concept of telling you when he has the need to go (there had been a degree of damage to his bladder prior to the spinal cord surgery but there was almost a remarkable improvement after the surgery which in my layman's mind would say that Sam should recognise the "urge" to pee, but specialists' opinions seem unclear).  This might not seem terribly problematic but when attempting to potty train the last time, we found ourselves in a situation where Sam would only urinate when I took him to the toilet, he just refused to pee in a nappy.  The challenge with this is that he freaks out when sitting on the toilet, so he needs to stand...which would ordinarily not be an issue...except that the lil dude obviously cannot stand unassisted.  So I land up supporting him, which leaves those little funky hands free to roam the toilet. Eeeeek! At home this is thankfully a little less of an Eeeeek! but this method of peeing means that Sam using a public toilet is not an option.  The tricky part comes in when you're doing a four-hour trip to Stilbaai and the dude won't pee in his nappy and cannot use a public toilet. You see? Tricky indeed.  Luckily I spotted this nifty little item on Facebook recently...

...and we're giving it a go...and a rather successful go at that.  We've gone days where Sam has only used one nappy the entire day and he seems to have gotten over the idea that he cannot alternate between nappy and toilet (even though it was actually pretty awesome that that was his mindset).  The only minor obstacle here is that I haven't quite yet figured out how I'm going to go about sticking little green, froggy urinals in every public bathroom we might ever need to visit in the greater Cape Town area.  It's a little all over the place for now but it's a start (again)...an awfully tricky start...but a start nevertheless.

And we're almost on to the really good stuff (nay...awesome stuff).  Last bit of trickiness comes in with those funky little feet.  After acquiring some rather entertaining physical issues (a hip which keeps clicking out...a knobbly-thingy protruding from my neck...and and) I thought it might be best to stop carrying our 25kg's of smurfiness around.  Understandably the lil dude was not too excited about having to abandon his go-to mode of transport, being mom's hip, but now seems quite keen to walk into school (assisted of course) in the mornings...unless we are late (which, ahem, almost NEVER happens) then hip it remains.  So, lil dude is keen to 'walk' and mom is keen to have something vaguely resembling an aligned body back at some stage - it all sounds pretty peachy.  Which it is.  Except for these uniquely-designed little feet :

While it's pretty awesome to see how steadily more confident Sam is becoming on his feet, it's a little worrying that these little feet seem to get more funky by the day.  Sam is not very keen on walking with his AFO's on, but walking without them seems to be worsening both the Hallux Varus in the left foot and the over-pronation in the right foot. So, the problem - Sam needs to walk.  Sam does not want to walk with AFO's. Sam's feet are thus becoming more funky.  The solution? I am clueless. For now. 

And on that terribly constructive note...here's the AWESOME!

My precious little, triple-diagnosed, previously deemed "ineducable" and only worthy of "a place to put him so I could go on with my life" flappy dude took part in his FIRST EVER school concert.  This mama's heart near exploded with pride and awe as I watched him...what an incredible kid! What an incredible inspiration! What an incredible school for being able to recognise the potential which lay hidden in the non-verbal, sensory-dominated labyrinth in which Sam waited to be discovered.  Thankfully though, before I could embarrass myself by turning into a blobbering mushy mess, my not-so-little-anymore very flappy and terribly cheeky dude decided to throw a Sam-spin on things...see for yourself xxx

An abundance of FIRSTS!

Sam's very first school term (semester) has come and gone..hard to believe that it's been more than three months since I sent Sam's tutor dismal messages about not being able to find the 'right' carer for Sam, which would prevent him from starting the term with every one else just five days later.  Yet here we are several classwork activities, one progress report and a very-first parent/teacher meeting later. I still find myself occasionally bordering on disbelief at the unexpectedly painless transition from homeschooled to classroom for Sam...if I've said it once, I've said it a million times...this is just not how I expected things to go. But, have no doubt, there are no complaints about avoiding the resistance I anticipated.

It was incredibly emotional opening Sam's bag up at the end of the term to his report and classwork books, sent home for review.  Sam thoroughly enjoyed going through his school books with me and pointing out the activities which were obvious favourites :

As was expected I guess, Sam's immune system did take a bit of a knock and we had a bit more of a troublesome Winter this time round (bar our fab run in with Rotovirus last year).  Thankfully we've stuck mainly to URTI's and a coupla bouts of croup (although pretty resistant bouts) which is hardly anything to really complain about.  

There have been some other unrelated 'bumps' as far as health goes...a few petit mal seizures (which were accompanied by an uncharacteristically sleepy Sam), the hallux varus in Sam's left foot seems to be worsening at an alarming rate and, just to make sure we're covering as many areas as possible, Sam has two fabulous talon cusps sprouting in that already-funky little jaw of his.

The petit mal seizures seemed to have righted themselves and the.most.painless.blood tests.EVER confirmed that Sam's Epilum levels are spot on. And yes, I can say that Sam having his blood drawn was painless on his behalf because we went into the pathologists late one evening (which should only have made the process more traumatic with Sam not liking his evening routine disrupted), wrapped Sam up tight in a blanket to help get a grip on his (usually) pretty powerful struggling and mentally prepared ourselves for the auditory onslaught which would undoubtedly be assaulting our ears.  And yet, although the lil flappy dude was shaking with fear, the needle went in with ease (after a few iffy attempts at locating a vein which is almost always impossible and something we seldom do without anaesthesia) and almost instantly the blood flowed into the tube. And that was that...not a peep, not a tear.  The sleepiness largely seems to have righted itself as well, with the exception of one or two random incidents last week.  Sam's iron levels came back a little high (just over double what they should be) which was a little unexpected for a kid whose diet consists mainly of gluten-free pasta and he seems to be struggling to regulate his body temperature more than ever before, particularly at night and in the mornings despite usually having on a least one extra layer of clothing than what everyone else has. We eagerly await the new 'medical' year so that we can run a few tests to make sure that there is nothing ominous going on with Sam's pituitary gland.

With 'firsts' being the order of the day...month for that matter...there have been a few more surprises. After struggling to get Sam to tolerate any other liquid other than warm Pediasure, Sam now manages about 100ml of juice from a squeeze bottle when at school! (And, yes, he of course refuses it at home).  About a week ago while sitting on the couch reading with him one afternoon, Sam asked me to put his specs on. Sam ASKED to have his specs on!! The very same specs which over the last 7/8 months get flung violently across the room the second they come within arm's reach. So last week I sent the specs to school with Sam's carer, Leeanne, and asked her to just try and put them on for short periods of time...by Friday not only had Sam asked for them again, but had kept them on practically the whole day.  While I am a little worried that Sam's eyesight possibly deteriorating may be the cause of his sudden eagerness to wear the specs, on a positive note (other than the obvious YAY for wearing them) it makes me think that Sam is so keen to soak up as much as what he can from his activities at school that he's prepared to do the necessary in order to learn more, which in turn means that he was able to quite effectively REASON through the situation. Not too shabby for an ineducable lil flappy dude hey? 

Amongst an overwhelming number of things to be thankful for during this unexpected, yet very welcome, twist to Sam's journey comes one 'tiny' regression and that being that Sam has effectively decided that life from here on forward shall consist solely of home and school!  There shall be zero tolerance for any deviation from the, now, extremely limited scope of accepted social activities. There was a short, one-week school break a few weeks ago and already on the Saturday after school closed (on the Friday) Sam was signing "school". By the Thursday I was about ready to go deposit him outside the school gate in anticipation of the Monday's return to 'normal'.  The fact that we live 3 minutes away and drive passed the school regularly, does not help at all...LOL! So yeah, the lil flappy dude is not currently in the running for social butterfly of the year but it's an extremely small price to pay for the peace of mind that comes with knowing that he's exactly where he's meant to be.

One of Sam's Spring class activities

And a fabulous looking snowman indeed

Another 'first'...yes, that's shaving cream!

Are We There Yet?

Where?

 

Okay....are we okay yet?

 

The first five years are the most challenging...after that, everything seems to settle and you'll be okay...one of the most regularly-shared reassurances we were offered during those first years.  Gosh...Year 5 became my desperately sought-after utopia, if only we could make it to that benchmark, then we'd be OKAY!

 

Except...we didn't get okay! Instead we got Belgium and Belgium was pretty sucky as it came in the form of an additional diagnosis, Cerebral Palsy. That is just so not how it was supposed to go.  Initial diagnosis at birth - Rubinstein-Taybi Syndrome. Great, got it...no speaking, feeding issues, ineducable...blah blah blah. Or so according to Sam's (then) paediatrician.  So, shatter all dreams for your littlie and try and just get through each day at a time...and literally at that stage because the little dude wasn't quite sure he wanted to do this whole ventilation-less breathing thing or leave his entertaining game of musical incubators in the NICU so for the first few weeks, each time entering the NICU was accompanied by crushing waves of nausea and fear about whether Sam had managed to make it through the night without slipping back to High Care.  But then we linked up with other parents of RTS kiddos...parents who were a more accurate and encouraging source of information and support than any medical journal and/or individual divulging said information...and we discovered okay, where children with RTS DID in fact thrive and learn and communicate (perhaps not verbally) and went to school and were so very educable.  So...kept the eyes focused on that five year mark and bulldozed ahead through therapies and surgeries and doctors' appointments and regressions and illness and and and...because at the end of all those draining challenges was our okay.  Except, literally days before our five year mark, our okay got ever-so-slightly crushed with the results of an MRI which explained why Sam was not yet quite achieving milestones other RTS peers had by his age. 

 

I think I kind of gave up on okay.  I certainly was not going to go setting new benchmarks because the tricky combination of Sam's diagnoses (Yeah, we got to officially throw Autism in there as well) meant we no longer had a clear guide as to what to expect when, with no similarly effected children to draw measure from.  So, benchmarks are just not our thing it seems.  I felt kind of lost.  Actually, I felt very lost.  There was no longer a plan with a somewhat defined goal.  We were goal-less.  Goal-less is not great I tell you, it can suck the motivation and spirit to keep going right out of you.  So we threw goals out the window and just went with whatever was working for Sam at that moment.  And, at that stage, it was one-on-one tutoring with as little social interaction or change of routine as possible.  And that worked really well, for a while. 

 

But by mid-way through last year things changed.  With no experience in teaching and/or educational guidance whatsoever, I ran out of stimulating things to challenge Sam with...and he became extremely bored with the work I was doing with him.  Aggravating the situation more was the disruption of our every day routine after I joined the Danniel and Friends Fund and while I was revelling in having something so exciting to throw myself into, Sam was doing just the opposite.  Still, there were no schools which I felt were adequately able to withdraw the immense potential lurking beneath the lil flappy dude's packaging and so homeschooling it stayed. 

 

And then 2016 happened :

Where Sam finally overcame his fear of sitting on unfamiliar objects

and ventured onto a (for all intents and purposes) "Mickey Mouse"

one Sunday morning...granted after much coaxing from Dad.

And the newfound courage to try new things lingered a little longer.

 

And we added a member to our family - Chipolata aka "Chippy"

who first caused incredible disruption in our home as Sam battled

with the idea of having his place of comfort so vigorously invaded

by this not-so-welcome addition.  But before long, the two had bonded

and now every day upon arriving home from school, Sam first spends

a few mins with Chippy (who, if he was human, would most definitely

be just as flappy a dude as Sam) offering his hand to Chippy for some

crazy-affectionate licking and nibbling.  

 

Um...did you spot it...THAT word...school!

 

At the beginning of the year Sam and I started attending one-on-tutoring sessions at a newly opened school closeby, Edu-Play.  The sessions went extremely well. Sam completely soaked up what was being shared with him as the activities were being tailored specifically to Sam's style of learning and the patient, accepting and genuinely caring atmosphere of the facility made Sam feel comfortable and safe.  At the end of the second term, Sam's tutor, Carlyn, suggested finding a carer/facilitator for Sam and enrolling Sam in fulltime classes.  Neither my mind nor my heart could work my way around the idea.  I'd given up on the idea that Sam would ever do something as "normal" as go to school, especially here in South Africa where not only are schools for differently-abled children limited, but schools which can cater for as unique a combination of diagnoses as Sam's are very nearly non-existent. Even as I started the process of trying to find the right carer for Sam, I don't think I ever really considered it becoming a reality.  And it almost didn't.  Finding a carer for Sam proved more tricky than I'd anticipated and it was literally two school days before Sam was meant to start that Leeanne happened upon our little flappy dude. 

 

So, on the 18th July 2016 I drove Sam and Leeanne to school for the very first time.  To be able to indulge in an activity so normal and taken for granted by so many others, is without words.  Sam's unexpectedly comfortable transition into his new routine still has me a little surprised, but reassured that he is happy.  As Sam nears the end of his seventh week in school, the novelty of each trip to and from school remains.  Over the passed couple of weeks Sam has been trying desperately to communicate more, becoming extremely frustrated when I am not able to fathom the signs he has resigned to making up himself when I do not grasp what he is trying to say.  It is a frustrating process, but also an encouraging one which I am sure can be built on to try and shape a way forward for some form of effective communication medium for Sam.  Being the only child in the school who is not able to walk, Sam has also started taking one or two steps on his own, although he is still extremely fearful and cautious.  On several occasions now he has stood completely independently to be able to use both hands to sign to me.  There was a nasty fall that happened a few weeks ago with one such incident, but the anticipated regression which would usually come with such a fall was short-lived and seemingly quickly forgotten.  The extent of Sam's progress over the last month-and-a-half is something I would simply not have imagined and without a doubt I know that Sam is where he is supposed to be right now, tapping into yet-to-be-discovered potential.  It makes my mama heart burst with pride.  And as I read the daily reports about what Sam has done at school, look at pictures of his daily activities and still occasionally glance over Sam's very first Playball report, unpack his lunchbox and prep his schoolbag for the next day I sigh and dare for a moment to entertain the idea that I think we have finally made it to okay.  

 

 

MAKING SURE WE'RE HEADED IN THE RIGHT DIRECTION

Gone, thankfully, are the days of hauling out cryptic map books when searching for never-been-there-before locations. Nowadays we jam on our GPS of choice or, if you're like me, Google Map every place before the time, preferably with a streetview, so that you can memorise all surrounding street names (just in case) and even a "landmark" or two. While I've not yet needed to purchase a GPS of the conventional kind, I am privileged to be accompanied on each trip by a location-finder of sorts anyway. Fabulously impressed that my particular GPS is spared the usual mechanical, insufferably-monotoned verbal directions, opting instead for charming grunts, excited gestures and warning screeches when necessary, the only snag is the rather limited choice of destinations (exactly two in total) and just as limited routes thereto. The you're-heading-in-the-incorrect-direction alarm could also benefit from a volume button or, even better, simply a MUTE button, particularly when attempting to make which is nothing more than a 200 metre detour in order to take care of the concerning petrol light results in such extreme protesting that you look worriedly passed the light, take a breath and hope that there are sufficient fumes to carry you and said screeching GPS home.

This little dude...always an enigma with his odd Sammerisms. Almost as enigmatic is his exceptionally accurate knack for remembering the makes of cars and who drives what. Every car trip, even while ensuring we are travelling his preferred route, is spent scanning the roads and pointing out every make of car he recognises. Different colours don't confuse him, so its the model of the car Sam's actualling taking note of and then excitedly gesturing whether it's Daddy's car, Nina or Lisa's car, etc. With mind-boggling perception Sam will notice a car whisk briefly across the road, even from a surprising distance. It's really quite intriguing.

Unfortunately we received some not-so intriguing news on Monday regarding Sam's vision. With Juvenile Glaucoma being linked to Rubinstein-Taybi Syndrome, for the first few years of life Sam underwent six-monthly Glaucoma examinations under anaesthetic, as the Opthalmologist we were seeing felt that Sam tolerating the examination simply in his consulting rooms was highly unlikely. Luckily (?) as Sam was having surgeries almost every six months at that stage, finding theatre time to couple the examination with was never a problem as having Sam undergo anaesthetic simply for a 5 minute exam was also not ideal.  However, the only surgery Sam has had over the last two-and-a-half years was done with less than 24-hrs notice which was just not enough time to bring an Opthalmologist on board.

Concern growing with each passed examination-less month and Sam seeming to have lost interest in reading flashcards and books like he used to and even becoming a little agitated when I tried, I decided to make an appointment with a local Opthalmologist to discuss going ahead with the examination in theatre, even if it had to be a 'wasted' anaesthetic. When we arrived at the rooms, the receptionist asked what we were needing to be done and when I replied that I was wanting to make arrangements for the Glaucoma examination, she walked over with some eyedrops to dilate Sam's pupils. I laughed and told her not to worry as there was no way Sam was going to sit calmly through it. She suggested we try some drops just in case...and what a worthwhile suggestion it was. Sam did awesome through the examination, scan of the optic nerve and the tonometer. The great news is that there are no signs of glaucoma. The not-so-great news is that Sam is considerably visually impaired and should have been wearing specs years ago already to make the most of the limited time during which your eyesight develops. With vision teaching optimum development around 8/9 years of age, Sam's been robbed of some much-needed time. So specs have been fitted and once the apparently fairly thick lenses have been fitted, we'll dash down to collect so that not a second more is wasted.

Besides helping with his vision, Sam's physiotherapist is hopeful that being able to see better will increase Sam's potential to walk unassisted as he'll be able to more accurately judge the distance between himself and, for example, furniture.

A sneak preview...Sam quite happily tolerated the specs but there's quite a difference between keeping them on for 10 minutes compared to 10 hours.

Smurf! Smurf! Wherefore art thou Smurf...

Sam's had quite a busy month and a bit, leaving mom little time for blogging...but thanks to my ever-handy phone camera, creating a timeline of the last few weeks is a delightful breeze.

 

At the beginning of October Sam was off on a road trip to Stilbaai to visit his Ouma and Oupa and cousins Hendrik and Boeta Dirk. 

 

After a fun weekend of seaside walks and being kept entertained by all the goings on, one would have expected the 4 hour journey home to be filled with blissful silence? 

It was not. 

It was instead filled with a non-stop,throat-annihilating screeching which proved distressing to the point of tears for at least one of the car's occupants (not Sam). It was not the first screeching episode of the weekend as this seems to be Sam's new chosen method of communication whenever he is unhappy about something but it was by far the most traumatic. 

 

  

The following week Sam was ROCKING his new AFO's! And I say "rocking" because one of the main reasons for not doing AFO's sooner was that we were pretty certain we'd be wasting an alarming amount of money on something which Sam would regard with the same amount of distaste as he does shoes and socks. With a completely resistance-free,  8 hour long wear on just the FIRST day we are beyond impressed with how tolerant Sam is being with these "boots of hope"! It has taken him some time to get used to actually walking with them on, which is pretty understandable especially as Sam makes use of his angulated big toe to sort of anchor him to the ground, but both Cornelia (Sam's physiotherapist) and I can already see the difference having a solid base of support has made to Sam's walking. 

With Sam weighing in at a cool 24kg's, which seems to be increasing almost on a daily basis, having him being able to walk independently would be an incredible blessing to both mine and Sam's physical wellbeing :D 

 

Sam's sleeping is, again, non-existent. And not because he doesn't want to sleep, which is perhaps the most frustrating part. For some unfathomable reason, what seems like a bucket-load of mucous seems to form in his airways at night and he spends hours trying to choke his way through to some actual breathing. It has been going on since the end of September so by now, as I am sure you can imagine, we are ever so slightly sleep-deprived. 

Three Saturdays ago Sam had two seizure episodes. We admitted him the following Thursday really just for observation, but when his ENT saw some fluid in his ears and an indication that Sam's sinuses might be blocked up, it was decided that a 3rd set of grommets and sinus wash would be in order. The surgery was scheduled for the Friday but Sam had an unexpectedly decent night's sleep on the Thursday already. Being "nil per mouth" from 7:30am already and only going into theatre at 2pm, Sam was such a little trooper. He only started asking for something to drink about an hour before he went into theatre. 

The procedure was over in record time and Sam was monitored overnight in ICU. Again, he absolutely blew me away with how well he did with having all those beeping little gadgets attached to him, not to mention tolerating a drip in his hand (!!!) which has always been a HUGE no-no and is usually removed within an hour due to him bashing the bandaged hand to the point that the drip in any case no longer works.

 

As with most of Sam's ENT procedures, a little snottiness can be expected afterwards, more so this particular time with him having been snotty in any case beforehand. Surprisingly enough though, he had another decent night's sleep the second night...despite trying several times to sleep on his stomach, monitors or not. But his very first night back at home and we were drowning in mucous again and apnoeaing a-plenty. The only explanation it seems is that there is something in or around our home to which Sam is having some sort of respiratory reaction...now to figure out what. Process of elimination is not working out that great hindered even further by the seasonal change which, this year, seems to have affected many.

 

 

 

Sam and his never-ending worry that the ducks at the local pond are just not being fed enough, just as worried (it seems) as to whether they are all safely where they're meant to be as he attempts to do a headcount of all couple of hundred of them...on just two unique little hands.

 

Goofing around with his Big Sis xxx 

The Darkness Cometh!

And by "darkness" I am referring to that depressing, life-halting, germ-yielding, just-plain-dismal time of the year otherwise known as Winter! Bleh. Yes, I am a classic Seasonal Affective Disorder sufferer who finds it incredibly difficult not to succumb to irrational bouts of envy when seeing her overseas friends posting pictures of all things Summer...just can't help it, sorry guys! Thankfully, a little S.A.D. (a rather appropriate acronym, or what?) has been the least of our worries the last Winter or two...but YIKES! did Sam ever make up for it this time round.

 

A couple of days after my last post, the little dude landed up in hospital with Rotovirus. It absolutely floored Sam, who spent almost a solid week napping his time away...and we're not talking Sam's usual mickey mouse naps of like fifteen/twenty minutes. We're talking like 3-4 hour naps! Yes, really! Then you know for sure that the lil dude's struggling. Sam was discharged the Sunday and by the Wednesday morning we had to make another trip to the ward after Sam woke up sporting a 40.3c temp. I was pretty sure it was the remnants of that darn Rotovirus, hanging on to wreak its last bit of  havoc, but Prof Prof seemed to think it was something new brewing. Nah, I thought. No coughing or congestion...definitely Rotovirus. By 4pm that afternoon Sam was coughing and snotty. #sigh

 

I tried to manage with some OTC meds for a couple of days, but by the Saturday I had to admit defeat and accept a script for Celestamine. My lack of warrior spirit might well have been influenced by my own coughing and snotty constitution, forming an all-round, family partaking (with the exception of Papa Bear) in some pretty nasty flu. 

 

It is not unusual for Sam to struggle with sleep and a general sense of being unsettled after a hospital stay - it is the very reason why I try to cope at home with his illnesses before resorting to admission (obviously without leaning towards negligence of course). With the exception of the first night in hospital, Sam slept through every night...waking only to protest aggressively whenever a nurse came in to check his stats. But from the first night at home, Sam battled with sleep...the first few nights found him bodybashing himself around between midnight and 2am-ish, but soon we were back to our old demon...bodybashing anything from 11pm till 4/5am each morning. I don't know how I coped with this before, but this time round neither Sam or I managed the severe sleep deprivation well at all. Last week Tuesday we headed off back to Prof Prof, after almost a week's surviving on just 1-2 hours sleep each night. After advising that Sam's throat was a little irritated, probably caused by a nasal drip, and that his gums were looking a little fragile thanks to him cutting his molars...we headed home with a new script. Yay! Sam's teeth generally take MONTHS to eventually make their way through.  Months with only a couple of hours sleep a night? "Sure, we can do that!" she says laughing hysterically!

Although the meds certainly did help some, I kept thinking back to those night's of blissful sleep in the hospital despite Sam actually being really ill. The major difference between hospital and home was that at home Sam was still sleeping in our bed, smack-bang in the middle to prevent him from hurting himself when bashing, while at the hospital he slept in his own bed. So Thursday we decided to go out on a limb and move house without the actual benefit of a brand new house....in other words...rearrange our bedroom, which in turn meant rearranging almost the entire house! Sam's bed was relieved of the storage facility it had merely become and pushed snug up against our own bed (baby steps). And? Well, with some very light bashing every night around 1am every night, Sam has been sleeping comfortably there ever since.  As much as what he wants to sleep in our bed, being in his own bed is obviously far more comfortable and, it seems, partly responsible for his disrupted sleep.  And of course the quality of sleep I am getting being able to actually relax my muscles without the fear of falling off the 10cm little scrap of bed I was left to rest on each night, is quite delightful too.  Sam's still battling with his teething, his super-flushed cheek and relentless teeth-grinding tells me so...but he is at least getting a decent amount of sleep at night now. And who knows? Maybe the next six years will see us actually moving his bed a couple of cm's apart from ours....the sky's the limit folks.

 

 And some pics to catch up the last month...the parts which weren't spent sick in bed :

 

 

 

Sam's bestie, Smokey rabbit, and Sam having a moment

 

 

On the 18th of July, The Daniel and Friends Fund families were treated by Reach for a Dream to an awesome morning at the Aquarium. Sam was so well behaved and lasted a full five hours with only a very minor meltdown in the beginning when I stepped away for a few minutes.  We were so very proud of him :)

 



 

 

 

 

Family snap xxx 

 

And, thanks to our little germ-fest, with the exception of multiple doc visits and shopping sprees to our local pharmacy, that's really the only exciting stuff Sam's been up to!!! Roll on Summer xxx

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

 

 

 

 

 

 

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 





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

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!