6/2/10

Changes are a comin’…

My blogging has been well…atrocious lately.  I don’t think I have ever mentally had to deal with so much as we have lately, and it’s overwhelmed me to the point of just kind of shutting everything off.  Facebook is about the only consistent place I’ve been, but any avenue that I would have to discuss what is going on with us in detail has been overwhelming and I’ve just decided not to do it…  But I’m getting back up on my horse today, so here goes.

I won’t attempt to update you on months of changes in one post…honestly as much as the thought of writing it all out in one setting frustrates me, I know nobody would want to read it anyway ;).  So I will start with the basics and elaborate on it in time.  This is the bottom line:

*  We were allowed to move to Shreveport, a place that we never should have been moved to due to the health issues that Eli has. There is a system set in place to make sure families with special needs kids are only sent to bases where the appropriate resources are available. The problem is that if you get a General who decides they want you to move there, the special needs child isn't even considered. In our case it was Colonel W who skipped protocol, and sent us spiraling into hell.

*Once we got here there was NO help.  ZERO.  The schools are awful, not only for “regular” kiddos…I mean come on, who HASN’T heard about how awful Louisiana schools are?  All I can say is that anything you could imagine is nothing compared to the real issues going on in the dysfunctional program they call public education.  Eli was transferred to 3 schools in A MONTH AND A HALF. You heard me right. They have no grasp of special needs, or what to do with these children. If my child had no issues at all I still would not allow him to be subjected to the crap they call education in Louisiana. 

*The military has not been our friend, advocate, medical advisor or any of the crap they love to say they are.  The Air Force loves to claim how family friendly they are, but all that has happened is that they moved us to a place that had no support, no psychiatrists who would treat us, or had a 6 month waiting list, and the ABA therapists weren't actually licensed...they were college kids not even majoring in psychology/psychiatry, etc. So when Barksdale medical realized that we had greater needs than they could accommodate, they ERASED his diagnosis of autism and bipolar disorder, because if he didn't have any disability then they wouldn't have to reassign us. We were trying to go through the proper reassignment process, but the military refused to even give us any details, they turned their back on Eli, refused to help address his needs, the Col told us that his personal statistics were more important than getting Eli help, and have forced us to make decisions on our own without their support. Even the decisions we’ve made based on their own recommendations have not been supported by them. 

*Due to the military intrusion into our lives (observing Eli in his classroom, obtaining medical records without consent, discussing private matters with his teachers – which is against the law), and questioning Eli behind closed doors, WITHOUT MY CONSENT ABOUT ABUSE, I was forced to take Eli to Oklahoma where we could try to find doctors and get him into a good (and safe) elementary school. 

The Family Advocacy Unit at Barksdale had an agenda at that point, and it was to blame us for abusing Eli so that they would be off the hook. It's all about them finding SOMETHING to get them off the hook and pin the problem or issue on someone else.

*Eli thrived at the school in Oklahoma. My dear friend whom I grew up with was his teacher, and she understood him and all that we had been through. She worked with him harder than anyone had in the classroom, and we are eternally grateful to her. Eli graduated from Kindergarten and finished the year, and then was immediately admitted into a long-term residential/therapeutic facility…again.  For followers of my blog you know he was in a place in Austin, TX last year, but this time he is in San Antonio. 

*And based on his diagnosis, the specifics of how he is affected by change and moving and new doctors every few months…we have made the decision that the kids and I are going to make a permanent home in San Antonio.  My guess is that within the next 2-3 months we will be (for the first time ever) buying a home and putting down permanent roots.  It is unclear if Norman will be able to come with us, but regardless…it is a move that we have to make for Eli.  For consistency of home, doctors, schools, and routine.  So there are lots of changes coming our way, but now you have sort of been brought up to date, and I will try to be much better at chronicling our new journey.  Scary…yes.  But the amount of relief we all feel by doing this is overwhelming.  It’s what Eli needs…and it’s what we are going to do. 

For all my bloggy friends I will be catching up on your blogs soon; I’m sorry I’ve been MIA ;).  


My number one priority is to help ANYONE who is in the same type of situation. It took us contacting members of congress...filing multiple Congressional Complaints and IG complaints to get anything done, but we have learned so much. I am always available to listen, to help, to advocate and use any personal connections I have to help whoever I can, whether you are in Maine or Washington. I don't want this fight for Eli to stop with him. We have to fight for all our babies who need the right help and resources.

8 comments:

Libby said...

Goodness gracious! Yeah...I would say lots of changes are coming...lol. So sorry it didn't work out for y'all here :( But happy to hear about the new changes coming up. BTW...even though I've been here for 8 years, I do agree with you about the education system. We're going the private school route. Not looking forward to the tution bills, but you have to do what you have to do....as you know :) Thanks for updating and I wish you guys well with everything that is up and coming :)

Allison said...

What a nightmare, Stacey!!

I'm glad to hear you have found a good place for Eli, though...and in Texas, no less!! :) I hope Norman can join you all VERY soon!

Stacey said...

Thanks Ladies...Allison, me too...I'm not holding my breath though...the military hasn't been the greatest at family support, so not sure why they would start getting their act together now ;).

Sharon said...

Wow! What a lot to take in, Stacey. I hope you find peace in knowing inyour your heart that you are doing what is right for your family. All my best!

PS: I have a dear friend in San Antonio. Her hubby got a compassionate reassignment for their son. She is a great resource for the area. Just let me know if you'd like to contact her.

Julie Jabbers said...

Stacey,
I admire that you even have the will or strength to commit to anything else like a blog. You have been tested in every way possible, God sure things you're a strong women. I do to! I know the bible says he never gives you more then you can handle, but I know you want to say "Enough Already God!" So, don't forget to shout or whisper, he knows anyhow, he just wants to know you haven't forgotten that he has been with you all the way, EVEN though it may not feel like it:)
I didn't realize you had to re-admit Eli. I just cried when I read that. Its hard enough for our Aspie children to cope with life and changes and it enrages me the military has made it beyond difficult for you. Man disappoints. I just turned on the news and thought, well at least you got out of LA before the oil spill, AMEN to that! Try and keep up humor, resting, and praying. I can't imagine your emptiness/sadness being separated from Norman, but I know that may work itself out soon. Remember you have done what you can do, and a darn good job, I may have hurt somebody along the path.

Baloney said...

I hate to hear this but I know that once you establish roots you will feel like you are on a better path. At least you know the end is in sight.
Stay strong and know that we are all praying for you. You are amazing parents for taking care of your children in such circumstances.
Keep us posted.
San Antonio is a great place to be. My mom is from there and my aunt still lives there.

The Khans said...

So sorry about everything that has been going on Stacey. I pray things go better with the decision to move to Texas and the Norman will be able to join you as soon as possible. I know that would make things even better. But if not keep focusing on the positive and know that we are all praying for you.

Anonymous said...

Stacey sorry to hear you guys might be away from Norman for awhile but SA is a great place! I am glad Eli is finally getting the help he needs and deserves! Good Luck house hunting!

Virginia