Tuesday, May 20, 2014


Today we had our follow-up appointment with the behavioral specialist.  We didn't find out a heck of a lot more than his initial conclusions when we were there the first time.  The doctor went over the final report and we chatted a bit about next steps.  The good news, I guess, is that Jacob doesn't really "have" anything.  There's no set diagnosis at this point.  No ADHD (yet) and nothing on the autism spectrum.  He did say that if he does have ADHD, it could become more apparent in the coming years as school gets more demanding, but as of yet he doesn't see it.  He went over some of the symptoms that made people think it might be Asperger's, but ultimately he only has some of the symptoms to warrant a diagnosis (particularly with the new standards, but he didn't qualify under the old ones either), and those are basically just sort of coincidental.

Ultimately we just have a challenging child.  He has a very particular personality, likes things a certain way, and tends to be a little more egocentric than most kids his age.  And when you consider how egocentric most kids are, to think ours is more than average....well, yikes. 

He didn't have a lot of advice to offer.  He said to continue having him see the therapist and continue to visit with the school counselor and psychologist, because those things are going to help him become more self-aware and teach him how to get past some of the behaviors.  We need to continue to help him at home using the reward system we were using (but slacked off on for a bit), and pay attention to his body to look for signs of anxiety or tiredness, and try to manage those things as much as we can.  Between school and sports right now, things are a little nuts, so we'll have to see how summer changes things, as well.  One of the biggest things is working with the staff at the school to get the best teacher possible for him for next year.  If the people who have spent time with him can help determine the teacher that's going to be the most flexible and caring for his specific needs, that would be one of the biggest things we can do to help him.  The doctor said that people just need to get to know him and understand his specific quirks and tendencies to better help him along.  Rather than assume he's a bad kid, they can understand his needs and do what they can to tailor his learning experience. 

While I understood and agreed with the things the doctor was saying, I'll admit that I'm not entirely sure what to do now.  As comforting as this non-diagnosis is, it doesn't get him any help.  No, he doesn't have a learning disability hanging over his head, which is great.  He's very intelligent, and in theory he could outgrow or adjust to the challenges he has, so in that way he's in a much better position than he would be with a real diagnosis.  But it's clear that right now he does have some major issues, and we need to figure out how to manage them until he learns to do it himself.  We're doing our best to work with him right now and keep his special needs in mind, but that's still not enough.  He's been having a tough time following the rules at home and school has been a disaster for a few weeks now.  He's consistently been below the "green" level of their behavior chart, often missing the note home by just a bit.  He's been to the principal once, had a note home, and just gotten consistently bad results.   And since home isn't much better I can't help but wonder...If we, who have known him since birth, can't find the right way to fully understand and better manage him, how is anyone else going to do that?  I have a hard time remembering in the moment why he might be doing what he's doing, so I can't imagine other people are going to be able to do it consistently.  I sympathize with his teacher, because it's hard to give Jacob the attention he needs to stay focused while managing 20-some other kids.  I think she could do it better sometimes, but I fully understand why it's a constant struggle.  I'm not sure what advice to give other people at this point since we can barely manage it ourselves, but I guess it's still comforting to know that there isn't something cognitively wrong.  We just have a bigger challenge than most people. 

I knew when we started down this road that it was going to be a long process, but I had no idea how long and how twisting of a road it was going to be.  No easy answers, no quick fixes.  Jacob hasn't fit into one perfect category all along, and I guess it tells us under no uncertain terms what we've known all along--that we have a very special, very unique child.  He's got some very special gifts and I think ultimately he'll have something amazing to offer this world.  It's a very daunting task being the ones with the best opportunity to help him get to that point.  God help us.  We'll need it.

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