Monday, April 18, 2011

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I think it's finally dawning on me.  Maybe I'm late to the party.

Or I've been overly optimistic.  Or maybe I still have every reason to be optimistic.  Maybe this is just my very literal nature getting the best of me.  But after talking to Lori Saturday night, it seems like I'm not arriving at a place she's been at for awhile now.

When we took our little guy in to the doctor a few months ago, we finally got a referral to Birth-to-Three.  We had raised concerns almost a full year earlier but they were summarily dismissed by his pediatrician.  He also dismissed our concerns about Rachel.  We're transferring to a new pediatrician.

Anyhow, so we finally got an evaluation by Bto3 and it turns out that Ben is delayed in every area.   They call this Global Developemental Delay.  A representative of the school district also attended the assessment and talked with us a little bit about what he could look forward to from the school district when he turned 3 which included 4-day-a-week preschool and bus service if we wanted it.  Clearly, this would be one of those shorter buses, but I knew Lori wouldn't send her little guy on a bus so early in his little life so I didn't give it much thought.

Delay.  That's a fine word for me.  I hear that word and I think "Ok, this is something we can work with.  A delay is something to overcome.  You devise a plan and you catch up."  It's the can-do spirit.  You face down the odds and in the end, you're victorious.  It's the stuff of your standard summer popcorn movie.  It's the American way.

Since the assessment, it's bugged me that this hasn't caused me to spring into action.   The rest of life hasn't slowed down and I'm not exactly sure how to spring, but there is still stuff I probably should be doing.  I'm now actively trying to figure this out and do my part.  But since the assessment, Lori's been taking to play therapy two times a week as well as welcoming into our home 3 therapists a week.  That's also meant we've also had to keep our house in better shape than usual.  Thank goodness we've been hosting a small group on Fridays, that's meant that we've already been getting the house into shape weekly.

We've been told by different therapists that they're already seeing progress - he's also to focus on tasks longer.  We've also been told that there's a strong suspicion that he has a much larger vocabulary than he's currently using.  And I've heard him repeat (pretty clearly) some words and phrases as I've said them.

Since Ben was close to 3-years-old, we could only take advantage of Birth-to-Three for a short period of time.  So we also recently met with the school district for a second assessment.  We thought it went really well, even mentioning that they disagreed with the assessment of his gross motor skills, said that he jumps down stairs shows that he's advanced in this area, but cautioned us that he'd need to learn to properly walk down stairs, for safety reasons.

I read the summary packet from that assessment Friday night.  They, too, noticed that he properly ends with an uptone when asking for "Juice? Juice?".  But also, there it was, the words I'd been refusing to consider: Special Education.  

So I'd been struggling with this because I'm trying to understand what I think.  My uncle was born with a hole in his heart.  He was also mentally retarded.  The worst part - his pediatrician said he wouldn't live past the age of 3.  He did live past the age of 40.  I think I wrote about him recently.

And there's a man at church, probably in his 40s who attends church on his one, rides there on his bike.  After service, if you let him, he will talk to you for hours.  Although often he will talk at you, trying to explain something he saw on TV or something he's been thinking about.  His brain is obviously moving faster than his body because he has to continually stop himself and repeat words, sometimes struggling with pronunciation.  I think because of this, many people do not have the patience to listen to him.  I suspect that living with this his entire life he's also not had as many opportunities to interact socially with people so he doesn't even realize that he's dominating the conversation.

And I also have friends who are educators, some of them even Special Education teachers, and I know the heart of teachers, especially SE teachers.

So I struggle with what exactly my problem is.  Is it the label?  Is it the label applied to my child?  Is it my own pride?  Is it the idea that some of the special moments I'd like to celebrate as father and son may never come to be?   Have those words completely erased "delay"?  Am I admitting defeat?  No.  But what am I trying to defeat?  If this is the nature of my sweet, little boy, do words like defeat suggest this is something I'm trying to fix?  I prefer the word overcome, but is that fair or am I just fooling myself and not callnig a spade a spade?

There are no easy answers.  We've been through trials before.  As far as trials go, this one does not seem bad.  But all the trials we've had in the past, as painful as they've been while we were in them, they had an ending.  This one has the potential to be ongoing forever.  Which brings two more thoughts to bear... I'm not sure anything that is with you for the rest of the life is a trial - perhaps it's more appropriately considered reality.  But the other thought is that this isn't really a trial, is it?   This isn't like recovering from a theft or a or a loss or a ceiling collapse, this is just parenting.

Despite what it may sound like, I don't *think* I'm feeling sorry for myself.   If it sounds like I am, I trust you'll tell me in the comments, because that's not my intent.  I don't have anything to be sorry for.  It is what it is and I pray that God will grant me the wisdom to provide the best possible life (not the easiest, not the most sheltered) for both of my children, no matter what may come.

I hadn't ever given a lot of thought to Ben's future, I've never imagined him as a football star or what he might do for a career, and not until Friday had I even thought of things like camping or scouts or teaching him to drive, which seems odd because I know I've given some thought to things like that with Rachel, though she is a few years older.  I guess, though, that's a good sign, we have been busy enjoying the wonderful, sweet cuddly little boy he is.

If anything, I've felt guilty about the wish I made in the past that he would just stay little.

No matter what, every day with our children is a gift.
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