Friday, August 26, 2016

Just How Special?

So, if you missed it, the other day Kate Gosselin came out and said that one of her sextuplets has "special needs" and is currently living in residential treatment to help him learn techniques to manage whatever it is that he's dealing with.  Of course she got a ton of flak for this, for sharing this news with the world (when, most likely, he'd have preferred to keep it quiet) and for sending her kid away.  I can't say I agree with much of what she does (though I still think the kids are better off with her than Jon, but anyway...), but in this case I can see both sides.  I mean, the tabloids were probably on to it anyway so she might as well tell the truth.  And while it's hard to judge because we don't know what the "special needs" are (she referred to some "fluid diagnoses"), most people have put the pieces together that it has to be some sort of emotional outburst situation, as it had already taken him out of school and it was affecting his siblings.  Clearly those kids have been through a ton, and it's possible their premature birth could have played into some issues, but I do wish that Kate would have come out and said what's up, if only to raise awareness and hopefully de-stigmatize something.  That probably would have deflected some of the criticism for sending him away, if there was a clear reason for it and not some unclear issues that perhaps she just didn't want to deal with.  I saw a few commenters commend her for doing what needs to be done to get her son help, though, and I must say, I give her credit for going out on a limb to get him help.  She had to know she'd get criticized for it, so I'm guessing it was probably necessary.  But this post isn't really about the Gosselins.  I guess it just played into something that's been bouncing around in my head recently--that term, "special needs".

See, lately I've been thinking about that term a lot.  We've obviously been through a lot with Jacob, but to most outsiders, he probably seems relatively normal.  I mean, there are definitely people that see him act out in public and probably wonder what's wrong with him.  He sometimes seems like he can't control his limbs, he'll fly around the store, talking or making noise incessantly (often not sounding particularly coherent, if I'm being honest), and sometimes he just ends up sitting on the floor.  I'm sure people wonder.  But he seems to function relatively normally at school, even if he doesn't fit in fantastically well, so to many observers, he probably seems normal.

But how many kids need a special diet?  How many have to go to a behavioral therapist twice a month?  How many leave their parents walking on eggshells and choosing their battles because the slightest bad timing or risky decision could derail the entire day?  I know everyone has their stuff, but I wonder how many have ALL of this stuff.  I know there are some, but I venture we're in a select group.  And sometimes I wonder, should Jacob be considered "special needs"?  I don't mean that as any sort of slight against "true" special needs parents, or to diminish their struggle at all, because mine isn't nearly the same.  But truth be told, Jacob isn't like other kids.  He has similarities, but at the core he is a very unique, very difficult, and very complex kid.  Getting him through life is taking a lot of assistance, and it seems like this isn't quite mainstream.  But knowing what most people consider "special needs" to be, I feel a bit bad using that term.

But...the literal meaning of that phrase, without the current-use connotation, seems to fit what we're going through.  When we're out in public and he's acting out, I find myself mentally preparing some sort of explanation for the moment he unintentionally disturbs someone else.  Like, if his flailing around knocked him into an old woman or a little kid, and they look at me for an explanation, I wonder what I'd do.  I mean, yes, I'd apologize, but I don't really want someone judging my parenting when it is clear to me that his issues go so far beyond my control.  I have tried and tried and tried to get him to behave, but it is simply beyond what I can change myself, so part of me wants to explain that, in not-so-many words.  It's too complicated to say, "I'm sorry, he is completely oblivious to other people because of the constant messages in his brain," so comparatively it's easy to say, "Oh, he's got special needs," but I still hesitate.  Is "behavior issues" enough to explain it?  "He can't control himself"?  I don't know.  I wonder if people have looked at him and think the R-word or at least wonder if he has autism.  His awkwardness is obvious. 

The other night I had to take him to the post office with me.  I didn't want to, but I knew it would only be a few minutes.  But then he blatantly refused to get out of the car, speared me (gently, but still) with his lacrosse stick, pestered me and called me "dummy" all the way inside (I will forever regret using that word a while back to describe someone and a bonehead move), constantly tried to screw me up while I wrote out an address, tried to take my bag and the package, poked me while we were in line, and tried to block my vision by holding up a brochure in front of my face.  He was obnoxious.  Awful.  Apparently all because I made him get out of the car on an 85+ degree day.  I can't imagine what people in the post office thought was up with him.  It's sad, because I don't want people judging him based on those moments.  He's a smart kid who can't control himself.  We're working on that, but in the meantime it's hard to help him understand what he's presenting to other people.  He seems to not care, but I swear if he truly understood, he might make more of an effort while out in public.

I guess I just wish there was an easy phrase for this in-between place we're in.  We're not like parents dealing with a child with cerebral palsy or microcephaly, but we're also not just dealing with a kid with typical kid moodiness.  We're managing a very challenging, high-maintenance kid who needs his life to be set up in certain ways in order for it to be functional.  He can't control his anger with his brother, and he can't remember routine, mundane tasks because he has too many other things flowing through his brain.  We're exhausted and we're doing what we can, but he still won't throw us a bone so we have no idea how to make progress with him.  At least not permanent progress. 

This is by far the hardest thing I have ever done.  Oh, and if that's not enough, now Carter is getting in on the act.  We've had a series of bad reports at daycare--hitting, kicking, not listening--and the defiance in response to simple requests is getting out of control.  I don't know if he's been watching Jacob, or if his self-imposed late nights (he takes forever to fall asleep) are leading to behavior-impacting sleep deprivation.  We might have to take away the daytime nap at daycare since we've already had to do it on weekends at home, just to get him a more restorative night's sleep.  I don't know, it's something to try.  I'm just trying to be firm with him, but the sudden shift is concerning because I feel like we've seen this before and I just can't bear to do this again.  All along I've maintained the boys are different so I didn't think we'd ever get to the same point, but now I'm getting nervous that it's something more. 

Ugh, I'm so tired of all of this running through my brain all the time...from how to fix problems to how we're perceived by others to what the future might hold.  I just want progress.  I feel stuck.  Prayer, patience, and therapy...none of them involve a fast-forward button.  So here we sit.  And I still have no words to label it.  Sigh.

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