The Good, The Bad and the Ugly

Let's start with THE UGLY   and work our way back :)



 

 

 

This is a letter received by the grandmother of 13 year old Max Begley, a child with severe Autism, in Newcastle, Ontario, Canada. The letter is self-explanatory and has pretty much gone viral on the net, been covered in the news and probably been read by a decent number of parents to children with disabilities.  I can go on and on...and on...about how despicable the letter is and what an appalling character this woman has. But, although I am sure she is one of few who had the audacity to actually vent her feelings about how she views people with disabilities, I am just as sure that she is not alone in simply having had these thoughts. The news report showed short clips of a lovely-looking young boy, excitedly bouncing his ball around and jumping up-and-down with all the attention and support the community is offering the family and I thought "Heck woman! Imagine what you'd say about Sam in 9 years time!"

 

So instead of going on and on...pffft...can I just ask whoever might be reading this post who does not happen to be the parent of  a special needs child, just please DON'T be this woman. Don't disregard a disabled person's life as a waste of body parts, don't ignore that they have feelings just like you and your children do, don't instantly condemn their behaviour just because it is something you have no knowledge or understanding of, don't frown upon their parents as being lacking in the way of discipline and guidance when you see a disabled child struggling to cope with his/her social environment, don't fail to bless a disabled person with your smile just because you think it might go unnoticed or, worse, not be worth the trouble....don't not respect them...don't not accept them...don't not love them...Yip, that's about it.

 

 

 

THE BAD

 

The bad is actually kind of relevant considering the above. Sam has developed this new sort of grunt-type sound and his love of his newly acquired sound is growing as quickly as what his dislike for attention is and his, seemingly, growing frustration with not always being able to communicate properly.  It's two of Sam's most challenging Sammerisms at the moment....if he does something cute or clever he'll point at me to show his dad or Brampies or whoever...but then when the person looks, he gets so upset and protests with this loud type of grunt.  Also, when he's refusing to do something like lie down for a nappy change, he uses this same sound.....going completely bright red from the neck up and causing his little RTS moodlet on his forehead to almost glow. Honestly, this may sound crazy, but it sort of looks as if Sam's trying desperately to actually SAY something and becomes frustrated and angry when he can't verbalise his thoughts.  If we're in public and someone happens to look at him or, horror of horrors, talk to him he instantly gets agitated and a-grunting we will go.  It's almost a little sad to see it when you're not busy worrying that the poor little dude could burst a blood vessel at any moment.

 

THE GOOD

 

If I choose to endulge myself in the thought that Grunty Smurf is in actual fact trying to get his brain and his tongue/mouth on the same page, I would have to brag that it's not the only bit of remarkable progress we've had over the passed week.  Sam's absolutely atrocious "driving"of his walker has had me just a tad concerned and when I eventually had to resort to moving all the furniture safely (well kind of) up against the walls to avoid them being shredded by his bumper-car-manuevres, a fleeting thought of whether he would ever grasp the concept of walking lurked in the back of my mind.  At about the same time last week I decided to go full steam ahead with a gluten-free diet for Sam. It requires a little more effort and creativity where meals are concerned but it's definitely getting easier and Sam doesn't seem too concerned that gluten-free foods are definitely not as tasty as the good ol' unhealthy stuff. So, take a little fear (that he might not walk) add a little motivation (derived from the hope that I'm doing something useful with Sam's diet) and one gets a surprising amount of dogged determination. I decided last week that it was Sam and I...and his walker. And for two days every half hour or so I put him in front of the walker and made him stand up into it on his own and get down again on his own which were two of the biggest issues Sam struggled with when becoming more comfortable with the walker. On Thursday I was standing in the kitchen, the walker left in the passage and Sam happy-flapping in front of the tv.  Next moment Sam's head bobs out of view....and back in again, just a little higher this time...and around the corner he comes with his walker. Of course I went berserk with uncontrolled excitement which made him grunt at me in defense.  But how could I not....and now, almost a week later, it's still kind of surreal to see him calmly pull himself up and waddle away. His driving skills are not much less shocking than before but his sudden confidence is astounding.  As cruel as what it might seem, one day I really need to take some video's just to show the type of fears Sam deals with when having transition through "normal" day-to-day movements...sitting, lying down, etc.  But for now, you'll just have to take my word for it that this is all pretty huge. 

 

Sam is so confident about the whole thing now that sometimes he pulls himself up with his walker...walks like two steps...gets down on his knees...pulls himself back up, almost like he himself is having trouble believing that he was once so scared. And even though Sam's using the walk back-to-front it still building his confidence up even further, he now walks with me holding onto just one of my hands, he's started pulling himself up again in his cot and on furniture and even manages to manipulate himself around on his teeny weeny little chair so he can get off all on his own. He's exploring new parts of the house which previously he avoided, even though it's almost exactly a year since we moved here. Now I don't know if it's the gluten-free effect making his little brain streamline certain input more clearer or if it's me borderline harrassing the poor kid to the point of tears (mine, not Sam's) to get this or possibly a combination of both but it does feel so soooooooo good to see a little progress. No wait, to see a LOT of progress :)

 

 

We're even confident enough to play tenpin bowling in our walker 

 

 

And what we don't knockdown with the ball, we simply ride over

 

Going for a walk

 

Climbing off the chair

I know that these might seem like such trivial accomplishments but my-oh-my for a kid whose mobility sometimes causes him such fear that he forgets to breathe, it ain't so trivial at all xxx

PainfUL Blogging

THIS IS WHAT MY TYPING looks like if I don'T TAKE THE TIME TO "FIX" IT AFTER EVERYTHING i type.  the caps lock key has a (warped at that) minD OF IT'S OWN and KEEPS GOING on anD OFF AT really rapid, RANdom inTERVALS.

I've tried to outsmart the key by non-chalantly reaching for the keyboard when the key goes off, pretending to look elsewhere whilst whistling a merry tune, but in the split second before my finger touches the keyboard the little light starts its flickering dance...it is pure FrustRaTION at ITS utMOst!

Of course we can take the computer in to be repaired but apart from the worry that having your pc repaired usually results in acquiring some problems you didn't even have to start off with, it will apparently take 2-3 weeks before I have it back! That would be like telling me to survive without air or, horror of horrors, chocolate for 2-3weeks...this is my lifeline to our RTS family after all. Take yesterday for example, the whole no sleeping/lots of jiving thing was really getting me down (that and surviving on little scraps of sleep here and there) so I posted the video's on our RTS Facebook group and it turns out that Sam is by no means the only little RTS sweetie who has dealt/is dealing with this problem...and here I was thinking that my littlest dude did not think being 1 in a coupla hundred thousand was unique enough. Nothing makes it easier to deal with a new challenge than knowing you're not doing it alone, whether it's a few minutes or an ocean or two separating you from your support.

Sam's OT is busy doing some research on Rhythmic Movement Disorder which we'll discuss on Tuesday morning and then I've set up an appointment with Sam's paed on Wed morning to discuss doing a sleep study. At worst, the net information indicates that most kids suffering with RMD tend to outgrow it by the age of six...WooHoo...only another 1,OOO or so sleepless nights to endure! And some say this whole silver lining thing is hogwash...tsk tsk.

Grumpy Smurf

By Saturday afternoon, Sam seemed to be feeling quite noticeably better. His eating and sleeping hadn't quite returned to normal (whatever that may be) but he seemed a little less fussy and thoroughly enjoyed his first swim of the year. We made sure to keep his shades on all the time, with great difficulty of course, because the Atropine (used to dilate his pupils in anticipation of the glaucoma examination) has still not completely worn off. It's really quite odd and the first time it's happened, but each eye seems to be returning to normal at it's own pace. The right eye's pupil is pretty normal, while the left still seems to be quite dilated. It's really quite freaky to look at.

Ooohhh...that little tongue, which is seldom actually inside Sam's mouth.

Err.....define "kiddies"pool again, Dad!

Sam gloating after I tried to take him out but quickly returned him to his little turtley-pool after he screamed blue murder! Cheeky smurf :)

I honestly have no clue what Meghan was doing here, not sure she has either. She did mumble something about a somersault at the time. A somersault? Boy, things really have changed....in the good ol' days a somersault looked more like a turning-head-over-heels movement than a.....??? Well, what she's doing..LOL

By Sunday Sam was eating as per (his) normal again and had a really good night's sleep as well, with me only having to get up about five times as opposed to the usual twenty-something...and it was mostly to reposition him after he somehow managed to land up with his legs and bottom perched on the wedge in his cot and his head at the bottom. Definitely not the most reflux-friendly sleeping position. Monday morning started super-positive that Sam is definitely on the mend which obviously means that next Friday's surgery date is sure to be achievable. And it just got better...on Monday afternoon Sam slept for a whopping THREE HOURS! He ate every bowl of food (all 150mls of it) without any resistance and on Monday night blessed us with another trouble-free night and again astonished me with a two hour and thirty-eight minute nap on Tuesday afternoon. I was almost excited about Sam going down last night, already making plans for what all I intended to do with today's almost guaranteed two hour freetime while Sam napped. (Err...by plans I mean things like do the washing, update Sam's blog, etc). I just HAD to jinx it.

I don't remember Sam being still or anything remotely peaceful for more than about half an hour last night. He tossed and turned and whinged and whined as much as always and then woke up with a cough that is sounding dismally croup-like. And this morning's "free time"? Lasted a total of 17 minutes! It seriously just had to happen. I usually leave home at about 1:40pm to collect Meg from school so on Monday when by that time Sam was still sleeping and we were still reveling in his gorgeously long nap, Brampies went off to fetch Meg for me. Yesterday was also a little tense, waiting to see if he would wake-up on time for me to leave...which of course he did, with literally minutes to spare. Today I only had to fetch Meg at 4:30pm so his two/three hour long nap would have been absolutely no problem at all...had it actually happened, of course.

What are the chances that he can possibly pick up some other illness/germ within the next few days and again leave us no alternative but to re-schedule the orchidectomy?

Yet another postponement....

I often wonder if parents of kids with special needs or those that are just poorly and need regular surgeries, ever sort of "get used" to sending their little ones off into theatre, feeling less and less anxious with each surgery and the recovery it brings with it. I know for sure that I am nowhere near reaching that point and feel as stressed and worried as if each surgery were Sam's first. It, of course, doesn't help much when you think there's going to be a surgery, then you think there won't, then it's back on and then, finally, it's definitely postponed...which is where we're at with the orchidectomy originally scheduled for 14 December then postponed till tomorrow and, as of today, now postponed till 3 February.


So, taking a temp hovering around around 37.6 - 38 ºC into consideration as well as the no eating or sleeping, apnoeaing more than usual and red ears, Doc S did not feel that putting Sam through the surgery and the risk of opening him up for further infection, was wise....and as disappointing as it is not to be getting rid of that little testicle just yet, I was quite relieved to hear Doc S's verdict. So, here's starting a whole new countdown till 3 Feb.


There was something quite amusing that happened while Doc S was drawing some blood a few days ago, which I forgot to blog about. First, some background :


When Matt Tooke and his family visited us a few weeks ago, either his mom or his dad mentioned that Matt had such a sensory aversion to a particular texture that it would physically make him gag. At the time I thought to myself that it was surprising that Sam, with all his sensory issues, had not yet reached this level of defensiveness. Barely a day later (it could actually have been the same day) Meg was playing with a toy pom-pom and when it touched Sam's arm, he gagged! A few days later, Meg was playing with a balloon and sent it Sam's way and when it touched his hand...he gagged. The little mischievous smurf, I thought, never misses an opportunity for attention so had to "steal" an idea from our conversation that day. Anyway, we became more and more aware of new textures which would cause an aversion-induced gagging, like when Sam's favourite foam number 5 got torn in two and I cellotaped it together, he gagged when he accidentally picked it up at the point where I'd put it back together.


Anyway, texture aversion was nowhere near my list of concerns when Doc S drew Sam's blood the other day. Of course our first and main worry was that when Doc S put the needle in, Sam would scream so much that he'd vomit...especially as finding Sam's veins always proves to be a lengthy and fairly traumatic event for Sam. But, quite remarkably really, Doc S found that little vein super quick and had drawn the necessary amount within barely more than a minute and although Sam did cry, it was nothing near as epic as what we'd anticipated. But then Doc S, unknowingly, did the unthinkable...he put a little plaster over the tiny puncture! And we were off....to vomit-city. Of course we didn't figure it out straight away,  trying to catch bucketloads of puke does sort of distract you for a second. It was only when Sam managed to dislodge the plaster and then proceeded to gag some more that Chris figured it out, but by that time Sam had already emptied the entire contents of his stomach (which seemed surprisingly full) all over the pathologists' office'. Never a dull moment with our Sam...or even remotely ordinary for that matter.