Wow! Just over two months since I last blogged! Hangs head in shame.
What's been happening here in Smurfville? I think I would need to be able to make some sort of sense of it all myself to be able to communicate it in a way that would in turn have it make sense to someone else. But I don't. So I can't.
Again, no major life-threatening matters clouding our skies nor anything which most would consider detrimental to one's quality of life, but yet they are issues which are just that...
Sam's eating issues are still erratic and perplexing, yet thankfully there has been some improvement this week. For a long while he became so resistant to food that not only would he refuse eating it himself but would act out against anyone who was eating near him. This week, for the first time in months he asked for what used to be one of his favourite snacks - mini Marie biscuits. He did throw the bowl, contents and all, after two biscuits but it was a start. The next day Sam ate almost half of my toasted sarmie and seems to be back on track with eating again, which would've been great if we hadn't simply traded eating issues with drinking issues.
As those who know Sam personally are aware, he has a major sensory aversion to moving liquid of any kind...a water-hose running, water moving/splashing behind him in the bath and, always most entertaining, liquid in a bottle. Yes, at almost 7 years of age, Sam still drinks from a bottle...for two reasons :
Firstly, his oral defensiveness is so severe that trying to manoeuvre anything else besides his Avent teat passed his lips is a no-go. Also, he never closes his mouth around anything besides the teat...be it a straw, pump bottle, cup...whatever.
Secondly, Sam never had and still doesn't seem seem to have a natural swallow reflex, so even if you did manage to get him to close his mouth around a spout or whatever, he would more than likely choke on whatever liquid I'd managed to get into his mouth. Even after 6+ years on a bottle, he still sometimes chokes or somehow manages to get the milk up his nose, especially when I've tried to thin the Pediasure a little to try dilute some of those calories.
So warm Pediasure from a bottle has been his only form of hydration for many years. And still, Sam has never been 100% comfortable with even the bottle. A minimum of 5 bottles a day, every day, for the last almost-three years (because it took him 4 years to conquer enough sensory issues to simply touch the bottle) was met with the same process...the bottle would be handed to Sam (always at the precise temperature) and Sam would hold the bottle to his mouth and mentally prepare himself for having the liquid in his mouth. You think I'm exaggerating...being a little melodramatic perhaps? Close friends and family know the process well and have even joked good-naturedly that it looks as if Sam is first praying for his milk.
Despite there being some regression with the whole drinking thing, it has brought with it an unexpected benefit. While I can live with the refusal to eat, with Pediasure providing more than ample nutrition for it not to be anything more than a little disappointment at another step back, not drinking as well had me worried to the point of desperation. When pouring Pediasure into the lil dude's mouth from a cup/bottle lid resulted in such bad chokes that the milk would eventually spew from his nose, not to mention the amount of Pediasure which was being wasted as it poured from his never-closing mouth, it was time for some tough love...in the way of a Winnie The Pooh squeeze bottle. Granted there is no contact between lil dude lips and the bottle, but squeezing the milk in sure is a whole lot less messy and after a nasty choke or two, Sam seems to accept the squeeze bottle as a means of drinking and even seems less fussy about the temperature of the milk so big YEAH for not having to carry flasks of boiling water and a jug everywhere with us.
As it turns out, Sam's teeth seem to have been the problem with the drinking issue. His adult teeth push through before the baby ones fall out so in two separate places there were two teeth in one socket and I could actually hear the teeth grinding against each other when he drank, causing (I'm sure) the most horrific sensory repulsion. Since the one tooth has now fallen out (and escaped into the Bermuda Triangle that be the lil dude's digestive system...pretty much like every other tooth he's lost naturally) and the second loose tooth is slanting at an odd angle, drinking over the last 24hrs has been almost back to normal except that Sam will not place the bottle in his mouth himself...almost as if he doesn't trust himself to do it without creating that awful grinding again.
A re-visited challenge we're finding probably the most difficult is travelling. Sam has always been terrified of being in a car, but was least anxious when in my car with the most challenging part having been getting him into the car. Often there were frantic handfuls of hair grasped...little nails tearing at arms and neck when the 2 second manoeuvre to settle him into his carseat would require an ever-so-slight backwards tilting. But once strapped in, he would settle down quickly and that was the end of the panic. Recently though, when we've needed to travel as a group to a meeting or the like, I've had to put his carseat into a friend's car...which of course would not only result in the most aggressive car transitioning but a lil dude so panicked that his white-knuckled hands would not let go of the arms of his carseat, back arched in super-defensive extension and breathing happening in short, shaky gasps...even though I was sitting next to him providing deep-pressure comfort across his torso. Obviously I did this once too often because gone is the comfort he found only in my car and instead each and every trip we've made over the last couple of weeks has been reacted to as if in a strange car. It's fairly exhausting and any effort in the way of tidy hairdo's is destroyed within seconds of trying to get Sam into my car, replaced instead with what leaves me looking like I've been involved in the most heated of cat fights, with random loops of hair gone astray from my once-tidy ponytail and scrawly scratches for extra affect. Of course there's an upside...I've often joked that even if I won the lottery and could afford the most extravagant of vehicles, my little red tjok-tjorrie would still have to make do...but hey, now that the comfort once associated with that little red tjok-tjorrie is gone, there could be no more perfect time for an extravagant vehicle. Now to see about that lottery ticket....LOL!
It's too easy to become frustrated, impatient and despondent when facing some of Sam's challenges. But can you imagine spending 90% of your life captive to one fear or another? Simply trying to create an idea of what it might be like lends me the confidence to say that I would not have managed to overcome many of the issues Sam has....so whether we're screeching like a loon in the middle of a shop, nearly suffocating ourselves with the fear that goes with being in a car lately or diving face-first into a bath full of water because a ripple of water moved behind us...Sam remains my SUPERHERO!
April is Autism Awareness month and while Autism is just one of Sam's three diagnoses (together with Rubinstein-Taybi Syndrome and Cerebral Palsy-Periventricular Leukomalacia) it has, for some time, been the condition we struggle with the most as it is predominantly responsible for creating the challenges we battle when dealing with what should otherwise be simple day-to-day tasks...and so we are as passionate about raising awareness for Autism, as for the other two conditions. Having said that, Sam's t-shirt sort of sums it up...
AUTISM AWARENESS IS SO LAST YEAR...IT'S TIME FOR ACCEPTANCE!
