Too High or Too Low

The kids are both pretty dang awesome.  Both of them just thrill me to no end, despite how exhausting it is to keep up with them and also maintain adult responsibilities.  Henry is clearly the sensitive one while Evie is the adventurous one.  She has no qualms or fears about just exploring everything in sight, whether we want her in these crevices between furniture or not.  Henry is content to play and explore the objects around him and how they work.

She's going to be the "play in the dirt" kid

Evie would be pleased as punch to destroy them.

With Henry, we were rather spoiled (special needs aside).  He slept through the night early on (though that stopped recently), he was content to lie around or sit around in one place and contemplate the universe.  Of course, part of that was due to his physical limitations that didn't start resolving until about January/February of last year when he slowly grew strong enough to be able to stand then walk on his own.  But despite that, he seemed to be satisfied just playing in one place.

Evie cannot be stopped.  Her phases of rolling, belly crawling, then full crawling, then walking took barely just over a year whereas Henry was about 19 months old when he was able to walk with confidence.  Evie learned on her own how to get up and down stairs.  If Henry is quiet, it's okay -- that meant he was playing by himself, which was a brief and rare respite.

If Evie is quiet, it's cause for worry.

So when it comes to developmental milestones, we are unprepared for Evie.  For most of them, she's not only meeting them but surpassing some.  The only one she hasn't hit yet is speech, but we'll tackle that one later.  The point is that because Henry was and is so behind in many of his milestones, we just didn't know what it was like to have a more typical child.

For the average family, think of it this way.  Your first child is growing and developing as expected.  Speech, behavior, physical and cognitive abilities are all on track.  You get used to it, so when he's 5, you have your second child.  Then that second child turns out to be a second-coming of Mozart.  At 3 years old, she's composing sonatas and then investigating methods of safe-cracking (on the Internet while using a proxy so that the NSA can't track her), all with the self-control, restraint, and social development of a toddler.

Because of the difficulties we faced and will face with Henry's growth and development, and with his diagnosis, there was that requisite period of despondency and quite frankly, mourning.  The reality is that we mourned what might never be with him.  We lived in denial for a while, but eventually, we had to come to terms with the fact that Henry will never be "normal."

I even hate typing that, but that's what it is.

We're terrified about matters of succession; if something happens to us, who can take care of him?  We don't know.  He may surprise us later in life, but we can't rely on that.  We've come to terms with the fact that it's not realistic or reasonable that he'll study astronomy at the University of Hawaii straight out of high school.

In fact, we're not even confident he'd go to a traditional high school at all.

If he can one day go grocery shopping on his own as an adult, we would be over the moon.  That's the level of hope that we've had to adjust to.

But with Evie, because of her developmental track, we're cautiously optimistic that she'll be the one who's going to be more okay with life than Henry.  I'm sure she'll still have her issues, but we're less worried about her future than Henry's.

And that brings me to the point of the title of this post.  Because of the crushing defeat we felt with Henry's diagnosis, we're guarded and actually somewhat pessimistic about Evie's potential as a defense mechanism.  We don't want to let ourselves get too far ahead in terms of Evie's future lest those hopes get dashed even harder against the rocks.  And that can't be a good thing.

We end up being cautious not to expect too much of Evie despite our emotions, but at the same time, we have to be careful not to expect too little of Henry, because that's not fair to him.

But it's a hard balance to strike when you're caught in the middle of uncharted territory like this.

Neither of the kids are very physically affectionate in a traditional sense.  They don't cuddle, they don't come up for hugs, or just absently hold hands.  Both of them have tactile defensiveness, which means they don't like being touched in certain ways.  Their hands are particularly bad such that trimming nails is not just an ordeal but if someone stood on the driveway outside our side door and listened, they'd wonder if we were torturing and beating them for as much as they protest (Henry more than Evie; Henry screams and thrashes while Evie merely yells and cries...."merely," he says).

But recently, Henry has come up to me and asked to be picked up (in his own non-verbal way, of course).  And when I do, he simply melts.  He lays his face down on my shoulder and absently twirls my hair around his fingers.  And of course, my heart explodes.  I don't care if I'm already 10 minutes late in leaving for work.  I'll take that for as long as I can.  Evie smiles at me when I come home from work and greets me in her own unique series of grunts, babbles, and noises.

I know they love us, in their unique ways.  So admittedly, they're both surprising us in their development.

With their play, their interactions with us and lately with each other, I'm seeing two children who are growing on their own individual paths that are intertwined with us and each other.  Maybe not necessarily to the expectations of the rest of the world, though.  And while it's cliche to say that doesn't matter, sometimes it's hard because we're still a part of the world and we do have to interact with it.

We do have to answer questions about them and other people want to interact with these kids.  Other kids want to play with them, and sometimes don't understand why they're not talking or playing in a way that's expected of them.  In that, I worry less about Evie's ability to cope and I'm probably a little over-protective of Henry.

But again lies the danger of expecting too much of Evie while expecting too little of Henry.

And then I wonder if I'm overdoing that.  In my desire to protect them from the cruelties of the world -- especially toward anyone different, toward anyone with the label "special needs" -- am I instead doing them a disservice?  This is a rhetorical question, because that's part of my homework assignment as a father.  I need to figure out not only what they need, but what my responsibilities are.

So just as kids don't come with instruction manuals for parents, there's at least some kind of Ikea-like diagrammatic guide for neuro-typical kids.  What we have for special needs kids is an instruction manual for assembling a Whirlpool refrigerator that was included in the package for a suspension system for a Ford F-150, written backwards with French words using the Greek alphabet.

Yet somehow, this suspension system is somehow keeping our beer and hamburger patties cold.  And we don't know why or how, but we'll take it.

How much room to fly do I give Evie?  How much of a cushion do I provide Henry?  Or do I reverse that?  How much of a cushion do I provide Evie and how much room do I give Henry to fly?

Or how much room do I give both of them to fly?  And what do I do with myself when/if they keep flying?  Should that "if" have even been in that sentence, and if not, how can I make myself comfortable without it?

I got this iPad for Evie because she showed an aptitude for technological devices. Yet Henry's the one who surprised me with his interest and ability with it.