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.  

 

 

When you're missing a part of you...

...but don't know which one.

 

It's not like you're consumed with sadness or given to overwhelming bouts of hopelessness, although feeling hopeless certainly does raise its ugly head every now and again. It's not that you no longer find joy in your life or fail to appreciate the wonderful blessings that come your way, in fact sometimes you now find joy in things which before might not even have held your attention for a second or you'd have taken for granted instead of cherishing as a blessing.

 

You still laugh, still love and perhaps live life more passionately and with more purpose than you did before..."before" being life prior to becoming the parent of a child with special needs. You're a stronger, more determined, more resilient, more vulnerable, more giving, more humble, more thankful, more intense YOU! So much MORE of who you were before. But yet, there is still some part of you that is missing, perhaps a very small part of you but which absence occasionally ignites a feeling of restlessness and anxiousness.

 

You're fine. Really. Not surrendering to the likes of a diagnosis or three...not completely resigned to sacrificing the dreams you had for your child/children, but real enough to know those dreams might require travelling a path you had not anticipated. But still, you find joy therein as a new path brings people, friends, family into your life you might never have had the pleasure of knowing. You're fine. Really.

 

And then, as you spend your day posting your support in raising awareness for your child's "third diagnosis"...the one which blindsided you so after having made peace with the first two...peace which had taken years to revel in and find hope in...it hits you. You stare at your screen, you type the words, you acknowledge your tormentor...the missing part of you...the part from which you used to draw unfaltering confidence that it was going to be okay.

 

 

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