What Now?

This is the last week of my kid's 2 week Spring Break.  I'm so tired! I didn't realize how tired I really was until last night.

We've mostly been cleaning the house and relaxing.  The other thing that we are doing is to start crunch time for AWANA.  We are in our last 3 club dates and Becca and Micah aren't done with their books.  I've already said that that we are going to finish, so we have to do our crunching.  They haven't got very much left, but it's not easy to crunch Micah, especially with all the issues that he has had recently because of coming off his meds.  I decided to do something a little different to help him to catch up.  We went to another club.  Tony's dad runs an AWANA club, but it's a 45 minute drive from us so we don't usually go out there.  This week, since we are off for Spring Break so I'm less worried about making sure we are home by bedtime, I decided to take the kids out there.

MS struck.  I was doing fine, working through a long day.  That morning I had to take the kids with me to take my grandmother to her doctor for an appointment and a few other places.  I went out to visit my in-laws and we had an afternoon of study for AWANA.  We went to club and the kids were okay.  Micah got a bit frustrated but I expected that because of the lack of established routine.

At the end of club, while I was about to go and pick up the kids, I started to feel it coming.  It's hard to describe what it feels like when I start to lose control.  I get a little dizzy first then I sit for a while. This is the point when I realize that it would be stupid for me to drive.  I may be okay if I take care of myself at this point, but I don't trust myself enough to drive until I know for sure what is happening to me.  It's hard not to panic at this point, but if I do I just get worse faster.  I relax as much as I can.

Okay, all this is happening and I realize that I can't just go home.  I have nothing prepared for me to stay the night.  The kids are running around like crazy.  What do I do?

I hate asking for help.  I like doing things for myself, especially when it comes to my kids.  Still, I've come to recognize over the last few years that I have to say something and I just can't do some things on my own.  Most of the time I'm fine, but I get to this point where I just have to have someone else take over.  I called Tony.  He was 45 minutes away, not really going to be of much help, but I call him because I just have to.  Of course I also have to talk to people around me.  My sister-in-law, Carrie, is right there so I have to tell her.  She's another supermom, so she just jumps in and organizes what to do to get the kids back to her house.  We have to stay the night, but she has it all under control.  My kids just respond with no problems for the most part.  They know to just fall in line when mom is starting to have problems.  Micah generally responds to Carrie anyway.  She has been consistent with him since birth and he loves her. 

My mother-in-law came to drive us back to the house and get both Carrie's and my car and kids back.  I sat on the couch and just felt my body get weak.  I'm feeling awful.  Micah decided that he was going to go to bed really late and no one was in the position to start the argument with him.  I asked for a time that he would go to bed and we negotiated.  It would be 9:45pm.  Since he normally goes to bed at 8:30, this is pretty late but not enough for anyone to be worried since he didn't have to be anywhere in the morning.

I slept on the couch...well, part of the time.  Micah woke up many times that night.  He has spent the night there before, but he's always been prepared.  To suddenly have to go to a strange bed and not have any of his stuff for bed (he has to have one particular stuffed animal, his blanket he has had since birth, or at least one of his pillow pets) made him never really relax.  On top of all that, he's been agitated all day anyway. 

At one point during the night he actually woke up screaming.  I went in to "the football room" where he was sleeping and tried to calm him down.  I'm not feeling well still.  At this point I realized that the one thing that would help him the most was his weighted blanket.  It calms him.  He just wasn't going to calm down.  He woke up every 30 minutes all night long.  He woke up jerking and unable to relax.  I tried rubbing him down.  I tried laying stuff on him, and nothing worked.  I ended up laying pillows on him and sleeping halfway on the pillows.  This got me through an hour of sleep.  When he woke up from that, I gave up.  It was 3:30am and I couldn't get him to sleep anymore.  I gave him my phone and told him that he could play a game on it for a while if he was quiet.  While he was distracted I went out to sleep on the couch.  I woke up again at 4 because he came in to tell me something.  I gave him the DS.  He went back to the room again and I tried to sleep.  I tried to stay asleep as people left out the door for work.  I heard them all and just didn't move.  They tried staying quiet, but at this point I just hear everything.  It's the mom thing.

I'm not feeling too good today.  I'm just relaxing.  I have a thing to do tonight, but that's the last thing that is on my mind.  I have to get my body functioning.  My left leg is numb.  I'm just glad that it's only numb and I can still walk.  I'm glad that it's my left leg.  Crazy me, I know that if it's my left leg I can still function.  The right one means that I can't press the gas and brake right.  It's one of those things I can get around without.  It's funny what you decide what you can do without.

By the way, don't worry.  I'm not going to be driving tonight.  I will be avoiding driving until I know exactly how everything is going to affect me.  I'm not dumb enough to get behind the wheel without being in complete control.

Medicine and Micah

If you have been reading my blogs for a while, you know how much I struggled a few years back with starting Micah on behavior medicine.  It was a really rough decision.  Our family went through a lot of turmoil over that.  The last 3 1/2 years have been work to get Micah to where he is today.  He came off his medicine completely 3 weeks ago.

The objective of the meds was to keep Micah from becoming violent, right?  Well, at least to make him reasonable enough to realize that being violent won't fix problems.  Micah has become increasingly reasonable and pretty self-regulating as far as his temper goes, so we decided (along with his doctor) that we could give the decrease in meds every 2 weeks until there started to be problems, then we would stop the decrease and let him stay there a while.

After 6 weeks, we stopped completely.

This is not to say that we haven't had problems, but Micah has worked through all of them.  He can be reasoned with still, which makes all the difference in the world.  You see, before it was his first thought to throw something or hit or kick someone.  He would do this before we knew he was mad at all.  It made us completely unable to work with him. The meds mostly slowed down the anger to help him learn how to deal with it.  We were able to teach him strategies for effectively communicating his problems without violence.

If you've seen Micah lately, you probably have noticed a difference in his behavior.  He is louder and he gets angry faster.  It's the medicine out of his system.  It seems like a huge step back.  I'm here to tell you that it's a giant step forward that has been years in the making.

Lately Tony and I have noticed a few things clearing up in Micah's speech.  Fluency is much better.  He is correctly using personal pronouns without scripting.  He is coming up with more sentences on his own instead of his normal echolalia.  He has come up with new ideas that didn't come from something he saw on TV or a video game.  It's not that he wasn't doing these things at all before, but it's happening a lot more often.  Micah has also been mimicking other's behavior more, as if he is more aware of his surroundings.   
 
Anyway, all these things come with a price.  His stimming (self stimulatory behavior: flapping, "ee's", jumping constantly) has increased dramatically.  He gets louder faster.  He has hit again.

Here's the thing that makes me think that it's all a success today:  he was arguing with his sister and getting very angry.  The argument ended but he was still mad and he didn't get his way all the way.  He turned away and said to himself "breathe" and took his "5 big breaths" and calmed himself.  There were no prompts.  He just did it himself.

I don't think he would have been able to do that before the medicine.  I don't think I could have taught him how to calm himself down without it.  We needed that to help him learn.

Now, I know that he is still having a hard time and he is disruptive and not as reasonable as he was on the medicine.  Unless you knew him 4 years ago, you probably would see this as a huge step back.  I know better.  I know Micah.  He's going to be difficult for a while.  He's going to have a hard time dealing with the world around him for a little while.  The thing to remember is that Micah is able to make the choice to obey now.  It's not his first choice much.  He still fights with his ODD.  The fact of the matter is that he is fighting it.  We who surround him just need to support him while he is fighting.

Go Micah!