Friday, February 14, 2014

Same Old, Same Old

So yesterday was another meeting about Jacob, this time with the school psychologist, the school counselor, and Jacob's teacher.  We had to go over their evaluation of him.  As usual, no one is giving us a diagnosis, but every one of these meetings is, in theory, another step closer to it a diagnosis, a path to follow, or another idea to try to focus him in the classroom. 

The meeting was pretty much the same as what we've heard so much of over the past few months.  Jacob is soooo smart, but he just can't focus or follow directions.  He's in his own little world a lot of the time, and gets stuck on certain topics quite frequently. No surprises, nothing we haven't already heard or seen plenty of ourselves.  The good news is that he was in the 99th percentile for a lot of the tests they administered, and the areas where he did struggle were usually not too bad, aside from one test that he failed miserably.  He couldn't focus and it was only a 30-second duration, so not a lot of room for error.  Everyone says how much they enjoy him, but it's obvious that his inability to follow directions has made each of them nuts in one way or another.

As usual, I got all teary by the end of it.  I just can't seem to get through one of those meetings without crying.  I don't know exactly what it is, but I think it's just this awful frustration of not knowing how to help him.  We know there's so much potential there.  He's smart, he's engaging, he's talented...but he can't get out of his own way to really showcase what he can do.  He gets bogged down by his lack of focus, he rattles on about things that no one else really cares about, and he just can't seem to control any of it.  Which, of course, is why we're working on going to the behavioral specialist, who can hopefully give him tactics for recognizing those moments and managing them as he gets older.  I mentioned his similarities to Max Braverman on Parenthood a few posts ago, and that's all I can picture--him sitting in class driving people nuts with random facts and getting lots of eyerolls from his fellow students. 

I also feel this profound sense of sadness when I think about how all of this has put a giant wedge between Jacob and me.  He's been a daddy's boy for a long time, mostly thanks to sports, but for a long time before that he and I were nearly inseparable.  I was the only one feeding him most of the time for over a year, we spent the weekends together when Craig was gone, and the mere sight of me could elicit an automatic smile.  Carter's arrival obviously complicated things a bit.  Jacob wouldn't come near Carter, and I had to be with Carter a good portion of the time.  Despite my best efforts to spend time with Jacob, most of the time they'd be met with resistance.  He wanted to be with Daddy, or he'd act out so badly that I had no choice but to cut the time short (like at bedtime when he'd lose books for not getting ready like he was supposed to).  Nowadays Jacob just considers us "bad" parents, though he still likes to spend time playing sports with Daddy and can be almost his normal self with me when Craig is working and he has no choice.

I explained to everyone yesterday that while Jacob has always been a bit challenging, the worst of the behavior has only been in the past year, and the absolute worst in the last six months.  Thinking you have a "normal" child for four-plus years, only to find yourself suddenly mired in evaluations and therapist visits, is a little jarring.  You just can't believe this is your life.  I know it could be worse--we could be visiting oncologists (like my friends, who seem to be getting ever closer to a terminal diagnosis for their daughter--heartbreaking) or heart specialists, or dealing with a major traumatic injury--but this is challenging in its own way, because it affects the quality of life for all of us.  And it's certainly never somewhere we thought we'd be.

I'll be honest--my fear of having to deal with life-altering, difficult medical challenges was almost enough to make me think I shouldn't have kids.  I wasn't sure how I would deal with a child who was profoundly disabled or very sick.  I'm still not, I suppose.  I guess you just deal because you have to, but I always feared that I would either shut down completely or have so much bitterness for not being able to be "normal".  I was afraid I wouldn't have the patience, that I would resent not being able to do things everyone else does, that I would feel trapped to not have the freedoms I once had.  I do have little moments where I feel that way, even now, so I can't even imagine how I'd feel if we had an even bigger challenge.  I'd like to think that given a worse situation I'd just have to put all of my energy into getting through it and wouldn't have time for the sour grapes, but I don't know.  Regardless, you love your child and that doesn't change for anything, but it still doesn't mean it's easy.  I keep hoping that Carter is as normal as can be, partly because I just want to see how easy it is to raise a kid that isn't a serious challenge at every turn.  I know every kid has their challenges, but to anyone out there thinking that, feel free to come to my house and watch the madness unfold every day, then tell me if you have challenges like that.  Seriously, I'm curious.

Do you know what a mom's kryptonite is?  Simply interfere with the bond between a mother and her child.  That is all it really takes to bring a mom to her knees.  It is such a natural instinct in mothers to protect and be close to their children, and when that bond is broken, it is heart wrenching.  And I think that is part of what is leaving me in tears at every one of these meetings, that I feel so distant from Jacob, for so many reasons.  He doesn't want to spend time with me.  When we do spend time together, part of the time he's difficult to manage, part of the time he's hard to understand, and the rest of the time I get a tiny glimpse into the kid that he used to be, but with the twist that he doesn't like a lot of affection so I'm mostly watching from afar.  There's a sad realization that the moments where he seems normal are so few and another battle is likely around the corner.  It's such a far cry from the kid he was, and that contrast breaks my heart every time. 

The fact that he won't willingly get near his brother complicates matters further.  One of the people in the meeting yesterday had talked to the therapist that Jacob sees now, and the therapist made a comment that she doesn't see us looking like a family very much.  I've been there a handful of times when she has specifically wanted our input together, but yes, Craig takes Jacob to his appointments because he has more job flexibility.  I have to make up every minute that I'm not at my desk, so it's harder for me to take off for appointments.  I'd obviously be there if I was specifically needed, but she usually doesn't talk to us much so it would literally be both of us sitting in the waiting room for an hour for no apparent reason.  It's not that I don't care, it's just that it only takes one parent to drive to a doctor's appointment, and in those cases, it's not me.  That same therapist has always harped on how I need to spend time alone with Jacob, which I get, but that is easier said than done when normally he wants nothing to do with me and Carter is just the opposite.  I'd really love her to instead encourage Jacob to accept his brother (which he does not--he still seems to think Carter will go away at some point) so we can all spend time together.  Maybe someday.

I apologized to Jacob tonight as I was cuddling him in bed that the last year has been such a crazy one.  I don't know if it meant anything to him, but hopefully he'll come to understand that we still love him so much, no matter how much our time may be divided these days.  He appreciated his Valentine's Day gifts, a stuffed penguin he loved when we were in Pittsburgh last summer (though because he was misbehaving, we bought him secretly and held him for this long), a DVD of some of his favorite Scooby-Doo episodes (Harlem Globetrotters and Batman), and one of his favorite candies, gold coins.  He had a good night, and it's things like that that we want to build on.  It never lasts, but we'll savor it while we can and hope that kid is in there somewhere, waiting to come back out.

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