Tuesday, February 16, 2010

Change in Meds...

Well, as we knew when Eli came home from Meridell last May, the medication combination he was on that was working so perfectly would not work forever.  His little body is so small and is growing and changing so much, that we knew it would have to be adjusted...that was never in doubt. 

I would say around Thanksgiving time we noticed that things were getting harder.  He wasn't able to be redirected, he was a ton more stubborn, his eating habits were getting worse and he was refusing to eat things that he knew he even liked.  Our saving grace was his school in Virginia and the wonderful teacher and team he had there.  He was doing wonderfully, and he got what he needed.  They were so good at Fort Belvoir.  Then we moved here.

My anger at the military side of things is through the roof.  They "okayed" us to move here, supposedly checked the resources to make sure we could get care, and signed off on sending us here.  It is apparent that just as usual, they did as little to get by and to send their military member where they wanted to send him, totally disregarding the fact that there is a procedure in place to prevent such a mess.  My anger at the agencies I called before we got here is through the roof.  The therapy place...the ONLY therapy place here assured me that once we got here, we could get in within two weeks to do the initial consult, and would be starting therapy within a week to two weeks after that.  But they told me to wait until we got moved to make the appointment...which I did.  But when I did make that appointment they informed me that I would be placed on a waiting list until March.  This is a child who needs therapy more on a daily basis than anything else, and now we are having to wait months to get to the initial consult. NOT good. 

In the meantime, Eli is needing some medication adjustments.  I needed to get in to see a child psychiatrist to get that started, but guess what?????  There are approximately 4 child psychiatrists in this area who work with autistic children, and 3 of them aren't taking new patients...and the one I could get in with, graciously got us in on MARCH 24th!!!  So yep, we're still waiting on that appt.

So based on the fact that moving and changing environment is hard on autistic children, coupled with the fact that we moved to a place that has zero services for nearly 4 months - and that the services here are severely limited, it has been an absolute disaster.  Oh, and how could I forget the Louisiana School System.  AWFUL.  Flat out embarassingly  awful.  All I can say is that when we leave this place, I swear to NEVER bring my children back here.  EVER.  We have watched Eli fall apart before our eyes, and we have been unable to do anything to stop it.  So we were left with no choice last week, when he was absolutely in dire need of some medication changes, to have to do it inpatient. 

It's hard to explain that experience.  Knowing that it should have been prevented...knowing that it shouldn't have had to come down to that.  Anger at the fact that I cannot fix things for him.  It's frustrating.  He cries and begs to come home in the evenings, but he can't...not until they figure out the meds.  It would not be good for any of us, and it would only be hard on Eli to have done all these changes but not followed through with making sure they were the RIGHT changes.  I think the hardest thing I ever had to come to in my life was realizing that getting him help is the best thing I can do as a mother...denial does nothing but hurt Eli.

So the latest on the situation is that Eli has been inpatient since Wed. Feb 10th, and they have been working on changing his medicine.  I talked to his doctor just a few minutes ago, and she wants to make a few more changes, but she is pretty confident that they can get everything done there and not have to go to Meridell...at least not right now.  Only time will tell...I'm not sure that I can believe that.

For now though, we are still on those waiting lists, and hopefully we will be able to squeak by until they can start therapy here at home and get the other things started too.  Norman is working on getting us transferred to San Antonio this coming Christmas/January time where they have an abundance of resources and help, which would be beyond wonderful.  I will be updating Eli's blog more frequently, and I will be sure to let you all know of any changes and/or progress that is made.  Thank you for the prayers...they are truly appreciated and at times I think it's all that keeps me going...

2 comments:

Allison said...

What a nightmare :( I hope you guys can get to Texas ASAP!!!

Stacey said...

Thanks Allison...me too...