Archive for November, 2009

Happy Birthday Smooch!

2009-11-10 21.53.41

Smooch has turned 4.

Before I get into the story behind the picture, I have to tell a quick story about Owen, Aiden’s oldest brother.  We went to Target last night to pick out Aiden’s birthday present and found this Dora backpack set that Aiden would positively adore.  The backpack sings the ‘Backpack Song’ from Dora (no surprise there, I guess).  Alec ran up to it in the store and hit the play button.  At which point Owen and I had the following exchange:

Owen: ‘Dad – you can’t get that for Booch.’
Me: ‘Why not?’
Owen: ‘It’s annoying.  Really annoying.  He’s going to hit that button ALL THE TIME.’
(Owen has a particular emphasis he puts on ALL THE TIME – it’s exasperation and frustration all rolled into one with his hands upturned to the heavens – it definitely conveys his point).
Me: ‘I know – but he’ll LOVE it.’
Owen: ‘You’re right.  He will love it.  But it’s still annoying.’

But Nic tells me that Owen and Alec were SO excited to give it to him they woke Aiden up before school.  So either they were exceedingly generous in wanting their brother to be happy or they were hoping the batteries would die by the time they got home from school – if they could just get Aiden pressing the play button earlier.  I’m going to go with the first option.

But back to the picture…

Aiden’s proudly displaying the ridiculously good Chick Hicks cake his mom made for him using normal cake and copious amounts of  marshmallow fondant.  She better be careful because each cake she does like this just raises the stakes for the next one.  Alec requested a Transformer helicopter cake for his birthday – and I have to admit I egged him on a bit – that I thought was sure to test the limit of Nicole’s capabilities.  She pulled it off… to the point where one of the guys at the bowling alley where Alec’s birthday party was held asked how much she’d charge for making a cake for one of his kids.

Focus is not one of Aiden’s strong points, but he was there and on top of the cake process all night long last night.  He watched Nic’s every move and would sometimes shout out directions like ‘Mouf!’ (‘mouth’ in Aiden-speak) when he realized something wasn’t quite right.  Nic would patiently explain to him that yes, that part was coming.  And then Aiden would go giddily back to his position on the stool and intently watch the cake being built while playing with the cake roller and his own piles of fondant.  You could almost see the ‘aha’ moments on Smooch’s face as Nic took an amorphous blob of frosting and made a window, for example.  ‘Oh – that’s what that is!’

At bedtime, we talked about the cake.  Aiden was up very late (10:30 or so) because he’d had a nap and we’ve learned long ago not to fight a multi-hour bedtime process and just wait until he was actually tired.  I asked him if he liked the cake and he said ‘Yes’.  There was a pause and then he emphatically said ‘Eat!’ (one of his better words). I said, yes, we would eat Chick Hicks tomorrow (which is a funny thing to say out  loud).  He got this big smile on his face and laid down.

After about 20 minutes of my reading on the floor and listening / watching Smooch flop around on his bed it was pretty clear that I needed to go get ready for bed and sleep with him because he wasn’t going to sleep anytime soon.  The pulseox machine never lies and his pulse was up in the 110’s – nowhere near the magical 85-95 range that indicates he’s about to doze off.  I brushed my teeth, got my PJs on and hopped into bed with him.  He immediately snuggled up next to me and held my hand as he likes to do.  I’m pretty sure I fell asleep before he did, but he always stays in bed as long as someone is with him.

I woke up at 1:30 in the morning.  We were still holding hands.  Which is pretty amazing if you think about it – I went to bed holding the hand of a 3-year old and woke up holding the hand of a 4-year old.  These are the moments that parents of ‘normal’ kids don’t get.  I would never have been snuggled up with Owen or Alec as they passed from 3 to 4.  For all of the crap that comes with his disease, there are so many other special moments that wouldn’t occur if he were ‘normal’.  And that in and of itself is a tremendous gift…

Happy Birthday, Smooch!



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One of the most challenging aspects of Aiden’s day-to-day interaction is definitely his speech.  He’s only got 100, maybe 200, words in his repertoire.  So he gets frustrated when he’s trying to convey something to us and we’re not getting it.  Alec, our middle child, seems best able to interpret some of the phrases we can’t pick up on.  I don’t know if there’s a ‘crazy’ gene that those two share that enable a deeper level of understanding.  Sometimes it reminds me of the scene at the end of ‘Bedtime Stories’ (click to view) where Adam Sandler had his tongue stung by a bee and Russell Brand has to translate for him.  Except it’s less eloquent.  And Alec doesn’t wear a coconut bikini.

Smooch went a whole summer of saying “oooocco aline” – and us having no clue what he was saying – until Alec was able to point out that he was really saying “Dinoco’s all mine!” from the movie ‘Cars’ (I could do an entire post on Aiden’s love, nay obsession, with particular movies and his ability to recite entire scenes but I’ll save that for another time).

My wife has shared two particularly funny stories from Aiden’s speech therapists (who qualify for nominations for sainthood, by the way):

1) One of Aiden’s really tough words is “milk”.  It was one of his first words and its one of his most dysfunctional.  It sounds like “guk”.  One therapist described it as “m” followed by a gulping noise.  It was so bad that the therapist removed the “milk” flash card from the deck because there’s no hope right now of Aiden making progress on that word.  But sometimes she forgets, the flashcard comes up with a picture of milk and Aiden lets fly with “guk”.  Aiden’s all proud because he think he nailed it.  And the therapist can’t help but laugh.

2) The other one is more of a knock on me.  Every time the flashcard for ‘pop’ appears – in the shape of a coke bottle – Aiden says “bee” (beer).  Again, he’s immensely proud.  Actually, I’m going to put this one on the therapist and her outdated flashcards.  What kid sees a bottle and thinks ‘pop’ anymore?

So, what does this all have to do with the title of the post?

My family definitely has a tiny bit of sarcasm / smart-aleckness to them.  The other two boys have picked up on it (or genetically absorbed it).  I like to think it’s from me, but I’m pretty sure it’s all my wife’s fault 🙂 (see? there it is, right there).  At any rate, despite the 200 word limit Aiden has it, too.  And he’s used it to master the perfect comeback.  And he figured it out all on his own.

The comeback?  Well, it’s beautifully simple and effective all at the same time.  The trick is that anytime someone makes a statement – or asks an obvious question – you turn it around back on them.

Here’s an example.  Let’s say I tell Aiden to stop doing something – which happens a lot as he’s surprisingly destructive AND fast: “Aiden stop!”.

His response?  “Ooo bop!” (that’s “You stop!”).

Now, what are my options?  If I say “No, you stop!” I’m:
a) arguing with a developmentally challenged four year old
b) not very creative
c) totally egging him on because he can play this game much, much longer than I can – and he thinks it hilarious

So, I pack it in.  He wins.  No sense in beating a dead horse.  Time to distract his attention and move on.  But in that one line, I’ve been shut down.  And you can imagine the host of  statements from his mom or me that triggers the comeback: “Aiden, pickup toys!”, “Aiden, don’t eat the lightbulb!” (true story), “Aiden, don’t tackle your brothers!”… all flipped right back at you.

Check and mate.

My absolute favorite?: “Aiden, are you poopy?”

“No, ooo poopy!”  accompanied by a massive grin.

Best… comeback… ever…

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