Colds and Fall

I wish I had a bunch of fun, crisp photos of the boys enjoying Fall to post.  This is my favorite time of the year.  I love the temps dropping at night so we can get some relief from the heat, clean crisp air, leaves turning with all the gorgeous colors, and the shorter days.

Daddy took this picture a couple weeks ago when trying to get some photos of me for a spotlight thing.  It didn't really work, because the boys kept getting in the photo.  It's funny how they didn't even look that happy to be posing for a photo, but they insisted on being in it. :)

This week has been one of the toughest.  Several things became painfully obvious, while coming into focus for me.

For a few months now, we've seen new symptoms in Jace.  And then the last few weeks he's been waking even more, having the body jolts (aka myoclonic seizures) more frequently, his vomiting and soiling and spaciness and odd movements and "falling" all increasing.  This stuff had reduced significantly with the help of the Depakote.  But just like with Aidan, that relief didn't last long term.  I wasn't asking the drs to increase anything or add a new med because experience has taught me they won't listen until it gets really bad.

Then Sunday night Jace had a horrible night.

2 am, I was already awake and heard the first body jolt.  I knew something would happen next and was waiting for it.  A couple minutes later he started choking, then coughing and shrieking.  He was completely terrorized and inconsolable. Nothing new, just hadn't seen it in a while.  Then all of his muscles tensed up so bad his eyes bulged and his face turned red.  Once that released he started jerking.  I assumed he was conscious, but he was in the chair with me and I was holding him... I was asking him questions and he was muttering inaudible stuff.  Finally when all that was over, his teeth started chattering- no fever- and he couldn't stop shaking... like all his muscles had just been extended way beyond their strength.  He was totally exhausted and so was I. :( The next several hours were a horrible mix of suddenly freaking out, temp increases only to drop right back down, leg pains, he even started swatting at something he thought he could see while exclaiming something inaudible, but nothing was there.  I called the neurobehavioralist and asked for an emergency appt.  By the time we got there (afternoon) he was showing signs of coming down with a cold.

I was expecting the suggestion of night terrors, or the slow "ohhh, it could be this, or that..." with the typical apathy I get. Instead I was met with him saying that I should have realized it was seizure increase from coming down with something...   This coming from the guy that always had another possible cause for the symptoms.  So I said that yes, I am aware of and remember illnesses lower the seizure threshold, but that drastically for a cold, and on an AED to boot?

Then I received a lecture (he may not have meant it that way) about how the drs testing and treatment for the possible strokes isn't good enough.  I can't force drs to do anything.  If he feels more should be done, he should be communicating that with them, not expecting me to.

It not only was upsetting for what I'd just been put through, but put a very long pattern of drs flip flopping into focus, that is beyond frustrating.  It also put Jace's whole regression into focus, it had been so blurred by the mini stroke like symptoms.  Even if they turn out to be mini strokes, it doesn't change the rest.

So blood work had to be done to make sure the increase had nothing to with his medication or liver.  I have no idea when the results will be in.
I got the paperwork in for the new dr... I was "reminded" of that too. :)

Then I started researching the new disorders Aidan has been recently diagnosed with.  Probably not the best week to do that.  It was salt in the wounds.  As I look for ways to better handle the abrupt behavior swings caused by everything from sensory issues and overheating to the seizures and brain damage itself, I was saddened to see there really isn't help for parents of neurologically disabled children.  Or it's nearly impossible to get access to.  What's readily available (if it hasn't been cut from the state budget) is very generalized "training," that's supposedly meant to help, only the parent home during the day, see that they are expecting something positive to come out of their own negative.  The assumption is that the parents are negative, therefore breeding negative behavior.  I know I am supposed to be loving, uplifting, encouraging, fun, etc.  It does not come naturally to me in all this intensity to be silly and make everything into a game.  But to be loving and encouraging, that is natural.  Still, I work on what I lack.  I know I'm not supposed to punish, and provide rewards and incentives instead.  But it still doesn't go away because the core is being ignored.  We are dealing with brain damage that is increasing, changing and affecting new parts of the brain.  The training is too general, not specific enough to their needs.  And just like my boys, I can't move forward when I'm having to constantly figure it all out on my own, or worse, being made to feel like an idiot when all I've done is ask for help- exactly what you're expected to do.
The other training available is basically distraction.  Manipulating your child by distracting them from the things that are their triggers.  In theory it seems harmless, I even did it for a very long time with what appeared to be success.  But it bothered me that I wasn't just teaching them to deal with the triggers.  And then when they are with those who don't know how to distract, or we simply are unable to, the behavior is there with vengeance.  It's also much more difficult to distract them as they get older- hello! Again, not helpful.  So frustrating!

Then, I felt a reassurance that I will get it figured out, even if I don't have their help.
A couple days later, I found two programs that are definitely helping me figure it out.  They seriously seemed to fall in my lap, I came upon them by "accident." ;)  They involve teaching what behaviors are expected beforehand with visual prompts, breaking it down into small (even tiny if needed) steps, repeating until it's mastered.  That's the general idea anyway, there's much more detail, thankfully.  Something that doesn't feel at all like manipulating or tricking- perfect!