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

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 

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

 

 

 

 

 

 

The unchanging....

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

Few realise how completely honest I am being.

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

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

They are the easiest part of our journey.

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

FEAR!

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

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

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

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

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

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

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

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

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

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

FEAR 54785588 : MOM 0

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

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...♡