Thursday, April 15, 2010

Every cloud......

Kind of ironic that I mention clouds on a day when an ash cloud grounds all aircraft when this blog is about me going away and the effect it may or may not have on the Doc. A week tomorrow I leave for China for 3 months due to work. It seemed such a long way off at the start of the year but as the weeks slipped away it grew gradually closer until now it is starring us in the eye.
I don't want to go but the choices are limited, if I don't I'm effectively making myself redundant and it's not a job seekers market out there. I would love if the Family could come with me but that's not feasible either, the Doc is doing great with his HT and we wouldn't do anything to jeopardize that.
I've been thinking about the effect of this on the Doc and reluctantly I've come to the conclusion that every cloud does have a silver lining. I don't think that me not being around for this period will have an adverse affect on the Doc(goes without saying that it puts an awful amount of work and pressure on P to keep everything going) to be honest I don't think I'll be missed - now I'm not looking for sympathy here - I just think that this is a reflection of the Doc's condition. If the Doc were NT I'm sure there would be upset and constantly looking to see when I was coming home but the Doc is not NT...... I believe he'll wake up on Friday the 23rd and go about his routine as normal, P will be there to get him up, fed and ready for his HT and he'll go about his business. He may look for me under the duvet, I know this as he did this a few times in the morning the last time I was away, but what I'm trying to say is that he won't be upset that I'm not there.
The other night the Doc saw me drive off to work and P said he cried for a bit and was blubbering something that sounded like "I want Daddy" but if he not seen me leave then I don't think he would have been upset.
I hope this makes some sense, it's not that I want the Doc to be upset, far from it, we spend most of our time ensuring he isn't. I just think it's ironic that due to his condition that he won't be(or at least wont express it)

I know I will.....

Tuesday, February 23, 2010

Great Expectations...

Did you ever feel like you were on the edge of the cliff? Though not in a bad way but that if you just let your self go that you could swoop, soar and dive through the air and not  fall..... that's how I feel about the Doc right now. It's as if he's on the precipice and that any second he's going to take off and there'll be no looking back, we will finally get to hear his little voice and even prehaps a "Mammy" or "Daddy" - there's a bottle of Champagne sitting at home gathering dust for just that occasion.

Of course I've heard the Doc speak before, in fact I've heard him speak many times, I've had full blown conversations with him, I've spoken to him as a child not older than he is now, as a young boy of about 6 or 7 and even as a young adult - the only problem is that I then wake up! I hate these dreams, I used to have perfectly 'normal' stress dreams about waking up on the morning of an exam and realising I didn't know anything but now I have these tortuous dreams. And as it slowly dawns on me that I was dreaming, the reality of the situation hits me like a slap in the face.

It's the expectation which has been the hardest to control, in the past we would have thought that in a months time or 3 months time or that by Easter or Christmas that progress would have been made but of course these came and went with no progress.

However, now we are seeing(and dare I say it, hearing.....) the progress which the Doc is making. The Doc took to PECs like a duck to water, the first few days I had my doubts as he laboured away on a single card with a picture of a pringle but within a week or two he had mastered the concept and now we use PECs cards for all the Doc's needs.(Major Thanks to P for all her work on these) This has been a big help to us understanding what the Doc is looking for and prevents alot of frustration on both our behalfs.

The Doc's vocabularly(sic) has just rocketed in the past few weeks, he understands the names of items which we never even introduced to him; one day not so long ago Kirstin, our HT, was introducing some new flash cards to the Doc, she was only planning on showing him a few new ones but in the end she showed him the lot(about 50) and he got more than half them right straight away even though they were all new to him.
And then there are the sounds, he is really making an effort, we're definitely hearing the "o" in "open", and "oh oh",  and the "b" in "ball" and "bun" to name but a few, this is where the PECs really helps in that he has to make an effort at saying what's on the picture in order to get it. Along side that the eye contact has improved and his wanting to interact with us has also increased. We even get some word approximations but some of this could be wishful thinking........ But it doesn't stop there, only in the past 2 months the Doc has started to do kissing(!), the Doc doesn't do lips but he presents his cheek for kisses - he sometimes then wipes them away in front of you, you wouldn't want to be easily offended! And not to forget waving, it used to really depress me to have to wave the Doc's hand to wave bye bye, but now he does it all the time and if we're really lucky we get the occasional "bye" thrown in as well.

This of course has led to great expectations and who could blame us. We've been warned that even with all this progress that there's still no guaruntees, the Doc might never talk but damn it we're going to continue to believe, what's the alternative? I know there are plenty of knocks to come but there's no point in being pessimistic about the future, we need to maintain a positive outlook and whether its 6 weeks, months or years away; we plan on cracking open that bottle of bubbly!

This is the Doc's favourite video at the moment:

Saturday, February 13, 2010

Did the apple fall far from the tree....

With the realisation that something is wrong with your child come the thoughts about what you did wrong and why us? Why did we deserve this; we did nothing wrong, or did we? The doubt is there that if we had done something, anything, differently that the Doc would have been okay but I've always known in my heart and soul that we couldn't have given the the Doc any more love and care. There's feckers out there who have NT children every day of the week who couldn't give a f&*k about them and the Doc is a child who was planned, wanted and loved from the begining, so the question still remains, why us?

Now, I had never entertained any thoughts that it was anything to do with either P or myself but that changed somewhat on Aug 31st 2009. This was the day that the Prof gave Eoin his label - the diagnosis of ASD came as no surprise to us as he was only confirming what we knew to be true, in fact it almost came as a relief that we finally had a name for our nemesis and that we weren't crazy. Finally we could say to all the people that were telling us not to worry that there was nothing wrong with the Doc, that he would talk in his own good time; well in fact there is something wrong and we weren't just being paranoid parents! but more importantly we knew that with the diagnosis we had a starting point from which to start helping the Doc as best we could.

During the consultation with the Prof he asked both P and myself a few personal questions(wasn't expecting this) and my answers to these started me thinking that maybe the apple didn't fall far from the tree......

It was only a couple of questions about what we were like as children, what we did in our spare time(whatever that is?) and what we were like socially, but it got me thinking. I had been a quiet child, you could say I was super shy. Don't get me wrong, I hit all my milestones developmentally but I was very awkward socially and tended to enjoy my own company more often than not, I was an avid reader. Even as a teenager I was quiet, I found it difficult to speak with anyone other than family or very close friends. Eye contact was always difficult for me and names an unmitigated disaster zone. I've always struggled in larger groups, at school, college and even now I have to make huge efforts to remember people's names, at lunchtimes I will make mental notes of peoples names as they're being said, I need to repeat this exercise until the names become ingrained....

There have been times in the past when I would find myself begining to shake with nerves even going to the shops! Thankfully most(but not all) of this is behind me(cue laughter from P!), I am much more comfortable in my own skin but am still not the greatest when it comes to change or larger groups of new people - no surprise then that I'm with the same company for the past 16 years....... Poor P has also been convinced for a long time now that I have a hearing problem but with each passing medical my hearing is given a clean bill of health. The reason for this is two fold, firstly I sometimes have a tendency to speak too loud for given situations and secondly I'm always asking her to repeat things or just don't seem to hear things that are being said. Personally I think this is because I'm so caught up with what I've currently got going on in my head(ie Fantasy football, Battlestar Galactica etc) or maybe its that old male gem of selective hearing...... reminds me a little of the Doc, you could call his name till the cows come home and not a budge, say the word "ice cream" and you've got his undivided attention!

I've thought about this for a while and in the end I filed these thoughts away in the dusty filing cabinet at the back of my mind. I suppose it doesn't really matter if this has anything to do with the Doc or if it's me just being hypersensitive. The future is what matters, there's no point in worrying about the past. One piece of solace that I can take from this is that if I have learned to 'manage' my issues(however small) then maybe I will be able to help the Doc in the future as he continues his journey.

Thursday, February 11, 2010

Our little Super Hero....

I sometimes think of Dr. Destructo as a Super Hero in the Marvel Comics vain, neither a goodie or baddie but a misunderstood loner who tends not to get too involved except when matters really pique his interest. As a Super Hero he of course has many Super powers and abilities, , he reminds me a little of Ralph Hinkley from the early 80s TV program "The Greatest American Hero"(I'm going back a bit here, check out the link below.....) who got superpowers but lost the manual explaining them to him so he wasn't in control of his abilities. The Doc is somewhat similar, his powers vary, and some disappear like they were never there in the first place.
Not long after hearing the dreaded "A" word for the first time we noticed the Doc, tip toeing(to say I got hung up on this trait would be an understatement). This would be a really handy ability to have to sneaking up on people! And then one day he just didn't seem to do it ant more(TG).

The ability to be invisible would be really cool, the Doc thought he had this one mastered for a while, if he wasn't allowed to go someplace then he would scrunch up his eyes and plow on regardless, we believe because he couldn't see us that we couldn't see him.......back to the drawing board for this one!

It is obviously important for Super Heroes to be able to defend themselves, the Doc must have discovered that he had skin which was impervious to attack because he was always biting it (especially on the arm, wrist and hand) to test it. Thankfully for our sanity he has gotten past this testing phase and has come to accept his bionic skin.

Everyone knows how jealous Spiderman is of the Docs ability to climb, we installed gates in the front garden and he rendered them useless by scaling the side walls to escape. For his bedroom we installed a pet gate! This was because it is taller than the normal gate as one night P almost had a heart attack when she noticed on the monitor that the Doc was scrambling over the gate and laughing his head off.

Which leads me to the Doc's sense of humour, we thought we had been blessed with a very happy child, every night after putting him up to bed(even Super Heroes need to recharge their powers....) we would listen to him laughing away to himself, we thought it was so cute, that is until we learned about inappropriate laughter - fair knocked the wind out of our sails.... Thankfully the Doc doesn't find the world quite as funny nowadays.

Destructo by name and destructo by nature, the Doc likes to take things apart, if unable to by the usual means of brute strenght and ignorance he uses his super strenght to fling said object to the floor tiles which usually does the trick - a very handy method of getting the batteries out of our poor house phone.

And so we continue our turbulent journey, as these traits appear some stay, some wane and others disappear totally, we have come to accept them and not get too hung up on them and see how they pan out.
Two things are certain though; the Doc will always be our little Super Hero no matter what, and the other, the one superpower the Doc will always retain is his ability to melt our Hearts.....

Check this out----------->

Tuesday, February 9, 2010

Men and women are fundamentally different emotionally, whatever about the Men Mars/Women Venus debate I believe we both have our feet firmly planted on Earth. If either of us has any thought of reverting back to these alien stereotypes Dr. Destructo's needs drag us back to Earth.From the moment Dr. Destructo was born I have loved him and only wanted to do the utmost for him. Without doubt the longest minute of my life occurred just after the Doc was born when they took him over to the examination table to check him out, my heart was in my mouth, every parents worst nightmare could be about to unfold in front of our eyes, but no, Thank God everything was fine, 10 fingers and toes and all the rest. We had a perfect child or so we thought....

We both cherished every moment with our Baby and so what if I did occassionally look forward to bringing the Doc to Sci Fi conventions(we still will.....), but of course our bubble was burst or should I say deflated over time, we kept expecting the words to come but of course they didn't and then the "A" word was thrown at us, we couldn't even bring ourselves to say it out loud!
But life moves on and we came to accept our new challenge, it can cause ruptions in our relationship because although we both want the best for the Doc we sometimes see issues differently but that's okay too because it would be a very strange world if we were all the same. the important thing to remember is that we both have the Doc's best interest at heart and that we're there to support each otherthrough the rough times.

It's funny what upsets us, P sometimes gets emotional when she sees other NT children around the Doc's age and the lightyears between their development, I do too but am probably better at masking it. The biggest meltdown I've had was when I had to board up the Doc's bedroom window! The doc was climbing to look
outside and we were afraidof him falling back, I thought it would be no problem to me but when I saw I had transformed his bedroom into some lightless cell I broke down and sobbed for ages whilst lying on his cot.......

Being an engineer I want to "fix" Dr. Destructo but I accept this wont be the case, he has a condition which he will always have and all we can do is prepare him as best as possible for what lies ahead........

We will reach for the Stars and see how far we can get.....

Faith of the Heart(Enterprise intro)--->