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‘I ski’

During our wonderful Father’s Day weekend, we were all enjoying the sun and the water at my parents’ cabin by skiing and wakeboarding.  Everyone went, even Owen and Alec, Aiden’s 8- and 6-year old brothers.  They have  a pair of skis that are attached to each other (to keep them together in the front and not-too-far apart in the back) as well as a rope that someone in the boat holds onto in case they get into trouble.  Overall, a very safe way for kids to learn how to water ski.  And with me basically running with them in the water until they’re up, it’s pretty darn easy.  My older two have needed a lot of convincing and I don’t blame them.  It’s scary at first until you’re used to it.  That boat seems pretty huge and fast when you’re all of 40 pounds soaking wet.

After everyone had a turn skiing, Smooch looked right at me and said ‘I ski’

‘You want to ski?’ I asked.

‘Yesh’ was Aiden’s confident, assertive response.

I repeated ‘You want to ski?’.

‘Yesh’.  No doubt.  No hesitating.

In the balance of a very short period of time, I made the decision that yes, indeed, he was going to try skiing.  He’d been having a great day – totally with it and enjoying the lake.  The boy had seen his brothers, mom, dad, aunt, grandpa and grandma all ski and damn it, he was going to ski, too.

I told Nic Aiden was going to try skiing and got a very half-hearted objection.  I knew right then she was going to go for it.  Worst case scenario was that he goes 10 feet and falls down, right?

I set Smooch up on the dock and fitted the skis on him.  Big grin.  As I was pushing the boat out one of his skis slipped off as he sat there on the dock and he said ‘Daddy’ and pointed down to his left foot.  I slid the ski back on and tightened it up.  Big grin again.  ‘Daddy, ope!’ (rope) – this time pointing to the handle.  I handed him the ski rope handle and got an even bigger grin.

We lined up for the first attempt.  I was holding him up by his life jacket while the line got tighter.  Aiden yelled his version of ‘hit it’ about 5 times.  In between chuckles I managed to tell him that *I* was going to tell the boat when to go.  I gave him a quick kiss on the top of his head and said ‘OK, buddy – here we go’.  The boat slowly took off and Aiden went about 5 feet before tipping over to his left side.  His face went all the way under and he came up sputtering.  I grabbed him out of the water and asked him if he wanted to try again – and got an unequivocal ‘yesh!’.

I set him up on the dock and got him all squared away again.  The result was about the same .  I didn’t ask if he wanted to go again and he didn’t ask to go again.  We both had reached the conclusion that two good tries was enough.  It was one of those times when trying and failing was a huge accomplishment.  I was so proud of him for being so determined and not even thinking this was something he shouldn’t try.  And for not bailing on something after one attempt.  I hope he hangs onto that.  I hope we as his parents let him hang onto that.

We’ll see if Aiden ever wants to try again.  I think he will.  If I know my youngest like I think I do, I’ll hear ‘I ski’ at least a few more times this summer.

And next time, we’ll bring his leg braces to help him out 🙂

Ugh – do you smell that?

So, there are few things in life we enjoy and long for right now as much as the simple act of going to sleep in our own bed.  With the exception of Alec, none of our kids have been great sleepers and Aiden has been far worse.  You tell yourself you can do anything for a couple of years – but Smooch is 4.  And he still wakes up twice a night.  Yawn.  On the flip side, the only down time Nic and I have together is in the evening, so we’ve been making things even worse by staying up far too late.  We’ve been watching movies after the kids go to bed at 9 PM – which means we’re typically not in bed until 11:30 or midnight.  Double yawn.

It’s in this context that we went to bed last Monday night right around midnight.  We got ready, hopped into bed and both of us hit the pillow at about the same time, eyes closed.  Both of our eyes flashed open as we had this horrible realization that our bed smelled like pee.  Not any pee – Aiden pee.  See, Smooch had slept with us the night before and had leaked (apparently) out of his diaper.  And Aiden is on a medication that is supposed to protect his liver from some of his other medications.  When he first went on it, the Doctor warned us: ‘He might start to smell fishy.’  His body has never smelled fishy, but his urine has the slightest hint of an odor I would call  ‘low tide’.  It’s a little gross.

<< As a quick aside, if you were expecting glamour from a blog of this type, I’m terribly sorry.  This one is going to sorely disappoint you >>

Before I continue, this *IS* my fault.  I caved.  I gave the ‘OK’ for Smooch to sleep in our bed after years of trying my darndest to keep him sleeping in his room.  I didn’t want to give in and send Smooch the wrong message, which I realize is a bit silly.  Regardless, I gave in and Smooch VERY happily piled in with us on Sunday night and slept pretty well all night long.

But we got up well before he did – and when he woke up, he climbed out of bed and came downstairs, neither of us any the wiser to the defilement that had taken place.

Flash back to Monday night and the two of us, exhausted, trying to determine what to do.  I wasn’t in Nic’s head, obviously, but there was part of me that was like ‘Meh, it’s not so bad – we should go to sleep’.   And then the saner part of my mind kicked in and we both hopped out of bed.  But there was still hope!!! Maybe just a little leaked out and the sheets were all that had been tainted?  We ripped the sheets off and smelled the pad.  Crap.  Mattress pad off, now we’re sniffing the mattress.  Ugh – not good.  Nuts.

So, we clean up the mattress.  Resolve for Pets is fantastic.  So is Febreeze.  But we were left with large wet spot on our mattress while Smooch, ironically, slumbered on peacefully in his bed way past his usually wake up point.

What to do?  We conclude the best of many bad solutions is to sleep on the floor.  Defeatedly, we arrange our makeshift bed on the floor and lie down.

Me: ‘Hehe – at least Lexie hasn’t discovered us yet’

Two minutes later I hear the dog crate rumble which is the sign that Lexie is rising.  She must’ve sensed something was a little off.  She comes padding around the corner of the bed, sees us, and quickly glides around our floor-bed and plops her head down right between our heads.  Of course, she was on a pillow.  She thought the floor-bed was the greatest thing ever.

Nic then asked: ‘What do you think Aiden will do when he comes in?’

True to form, Aiden was as adaptable as ever.  About 1 AM or so he woke up, unhooked his pulse-ox monitor and came plodding in.  I don’t think he even paused at the door.  He just came in, plopped down next to Nic and went right back to sleep.  He didn’t say a single word.  Didn’t pause to try and figure out what was going on or why we weren’t in the bed.  He just looked, realized the people he wanted to be with where right there in front of him, and sought us out.  The ‘why’ was irrelevant.  I think we could all take a lesson from that approach to life.

Needless to say Aiden has been going to sleep in his bed since Monday night, much to Lexie’s disappointment 🙂

A simple walk

I have been sorely remiss in my posting as has been noted by several people – including my wife who is much more Johnny-on-the-spot than I.  And you can apply her diligence in blog posting more generally to all things Smooch.  She is much, much better at keeping her focus on Captain Destructive than I am, having learned long ago that a quiet Smooch is trouble.  On Saturday I suffered a parental lapse while working on homework.  Nic was taking a shower and came out into our bedroom to find lotion smeared all over the dresser, the dog bed and our bed.  Aiden smelled unusually good, which was highly incriminating.  A classic ‘failure to parent’ on my part.  In some regards it’s like having a 8-week old puppy that never grows up.  Silence means something bad is happening – you just don’t know where – and you are definitely too late.

But the highlight of my weekend was my walk with Aiden on Sunday.  I was dreading taking the dogs out for a walk given how cold it was, but it was beautifully sunny and I had been neglecting the dogs so I figured I had to.  I started bundling up and got the ‘go out-hide?’ from Aiden.

And what was the response in my mind?: ‘Kid, you have got to be kidding me.  You can walk maybe half a block without assistance.  Maybe.  And you weigh 45 pounds.’  But he rarely asks to go outside in the wintertime and – after some gentle prodding from my wife – I said ‘Sure’.   The next exchange was fairly comical – though typical – of our day-to-day interactions:

‘Smooch if you want to go on a walk, you need socks, dude.  Can you go get a pair of socks?’
‘Mmmm, yes!’
<< runs off into living room and stops – not sure if he forgot where he was going or if he decided it was too hard >>
‘Smooch – can you go get your socks?’
‘Yep!’ << runs into laundry room and grabs his jacket >>
‘No, Aiden – socks, dude – we need socks’
<< walks up to me, puts his arms around my legs and looks up at me >>
‘Ummm, Dad?’
‘You want me to go grab your socks for you?’
‘Yes!’

About 20 minutes later (I exaggerate – only slightly) we’re ready to go. Thank goodness Owen volunteered to go along – I’m still not sure I could have handled both dogs and Aiden. We headed out, me holding Lexie’s leash and keeping tabs on Aiden while Owen walked Jackson. I figured we’d maybe go around the block.

But a funny thing happened as we started. For one, Aiden seemed to have better stamina than usual. In general, he’s much steadier in boots so he was covering a lot of ground and not falling much. He was also highly motivated as he was grabbing snow chunks and chucking them at the back of my legs – which involved him stopping, trying to pry and iceball out of the snowbank, and then giggling furiously as he “snuck” up on me and pelted me with the ice.

We went about two blocks with that particular motivation moving Smooch along. We got to a dirt trail by our house and Owen and I turned the dogs loose. Aiden took Lexie’s dog leash because he wanted to hold onto it. He would stop, whip the bejeezus out of the snowbank with the leash every so often (don’t ask – I couldn’t explain it if you did) and then move down the trail. We didn’t rush. We just waited for Aiden to come along (Owen had the patience of a saint). He didn’t have his glasses on (he hasn’t been as photo-sensitive – nor does he seem to struggle in bright sunlight) and his blue eyes were sparkling. Snot was running down his face. And I realized that I almost never see him like this. His outside time has generally been limited because of the photo sensitivity and because his outside time usually leads to him getting wound up and having seizure activity. But not Sunday. He was outside, under his own power, walking, exploring the world, feeling the sun and the cold on his face. He was loving every minute of it. And I realized if I had succumbed to the desire to rush through my walk I would have missed all of this.

He probably made it about half a mile on his own, walking Lexie for part of it (I can assure you that her memories of Sunday are not nearly as fond – I think she would bite the guy who named her harness a ‘gentle leader’ – but she was sweet and patient with Aiden). Once we got back to the neighborhood I decided to carry Aiden – mainly because he started bailing on the sidewalk and trying to climb up the snowbanks into people’s yards, giggling furiously the whole time.

He surprised me. He did something I did not think he was capable of, which is one of the really hard things to learn as a parent of a kid with special needs. You want to protect them and not push them too hard, and I’ve always thought I did a good job balancing it all out, but I was clearly wrong this time. It makes me wonder what else he can do that I haven’t been smart enough or patient enough to figure out yet.

I wish I had a picture of him out on the trail but I will never forget the look of that smiling, snot-faced little boy, perfectly contented with a bright, cold, Minnesota winter day.

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!

 

Best… comeback… ever…

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…

Aiden…

His name is Aiden.  But he goes by many other names.  His older brothers gave him a nickname early on in his life and the name – and its variations – have stuck.  There was a TV show on PBS when Aiden was younger called ‘It’s a Big, Big World’ (in fact, it’s still on).  The show featured a mischievous monkey, Smooch, and his sibling, Winslow.  I don’t know how or why, but Aiden’s oldest brother Owen started calling him “Smooch”.  And it stuck.

No one got it.  The grandparents were especially confused.  The explanation of “he was named after a monkey on a TV show” didn’t exactly help.

And then came the variations.  “Smoochie”. “Mooch”.  His mom, Nicole, prefers “Smoochie Bear”.  She has this great sing-song way that she says it that usually sends him running because it means she wants him to do something, like wash his hands or pickup toys.  The call of “Smoochie Bear” is usually followed by a thump-thump-thump and a giggle as Aiden flees whatever he’s supposed to be doing.  She really only calls him “Aiden” when she’s serious.  Like when he’s not listening.  Which is a lot.  Owen, his oldest brother and bestower of the nickname, goes with “Booch”.   Apparently, now that we’ve adopted “Smooch” he’s moved on.  His other brother, Alec, likes to say “Smoochie” mainly because it’s impossible to say without smiling.  And Alec really likes to smile.  Me?  I like “Smooch”.    It’s simple.  And I don’t like change.  I even made up a little song using his name to the tune of the song they play at baseball games.  You know, the one that escalates at baseball games into a final “Charge!”.  If I liked baseball, I’d know the name of the song.  Anyhow, if I start into ‘Smooch, Smooch, Smooch, Smooch… Smooch, Smooch…’ it drives him wild.  And after a few giggles I quickly get a “Bop, Dad!”  (That’s Aiden’s way of saying “stop”).  This is accompanied by sign language for stop.  Apparently he wants me to be more serious. Then I’ll quickly get the sign for “more” and it starts all over again.

My beautiful wife went through a phase of trying to get us all to call him “Aiden” again.  “He has a name!” was the line the three of us boys had hurled at us for about two weeks.  It didn’t work.  What can I say?  It’s a good nickname.  They’re sticky.

So, what’s so special about this kid that he has so many nicknames you might be asking?  Well, for one, he’s my son, which makes me somewhat partial. 🙂 Second, Aiden has a disease called Dravet Syndrome, which is a pretty severe form of epilepsy.  You can read all about it in the ‘About Dravet Syndrome’ page.  But this blog isn’t going to be about Aiden’s disease.  It’s going to be about him – and, invariably his brothers and his mom – they’re all pretty inseparable.  Because at the end of the day, I am continually amazed by Aiden and the gifts he brings to our lives under the most trying of circumstances.   He perseveres and is filled with so much warmth and love in spite of the curveball life has thrown his way.

So this is for him.