Saturday, January 10, 2015

Person Centered Planning

I wrote a blog about my fears and projections on my husband. While I thought I was done learning from it I realized I still had more to take in on the subject. I am not ashamed I have been looking at the future of my son and my husband wrong for a while now. It's not a bad thing its a, typical thing that most of us parents make when it comes to handling a special needs child. However my situation is unique, I raise a special needs child and I support and take care of my special needs husband. It's role I took on because as a mother and a wife it's expected if the situation arises. I was blessed with that opportunity. Yes, blessed. Why? Because I am learning more about myself and those with disabilities more and more every day.
Just when I thought I was done with my eye opening, learning experience on Thursday, I went on to learn even more. The learning was going to continue and I was going to be even more emotional about it all than I already was. I was emotional over the fact that my husband was growing and taking back part of his life that he thought he had to surrender when he was going through his release from the military and his PTSD/TBI diagnosis.
I was in Austin for the Parent Organization Academy and was about to learn a whole new slew of things to help as our son transitions through life and all the new in's and out's of the special needs life in and out of school. I honestly thought it would have no bearing on my caretaking of Chris. It was geared to the parents not to a spouse taking care of a disabled husband but this speech I heard might as well been. I had to fight back so much emotion during her talk. It was at that moment though I realized I had to change my perspective and outlook.
Person Centered Planning. I had never heard of it until Thursday. I honestly had no real interest in it until I heard the doctor at our conference speak about it. At first I had little interest in what was said because my son is young and I really don't need to focus on transition.... or do I? Then she went in to speak about how we are so quick to make the choices of our child and their future with little to no input from them. True, very very true. I mean honestly what would he know about his future, what does he know about what he wants to do and what he wants to be? WRONG! He does and he has just as every right to speak up on it as you and I do. So how does this pertain to Chris? Simple. He has to start becoming a part of the decision making process. He has to start being able to speak up about his wants and needs. He has his rights and he deserves to utilize them.
I had been so quick to take over his role at making decisions, being in control and not letting him be able to do what it is he says he wants to do. It's not me being controlling, its me being protective. He isn't the same person he was due to his injuries. He struggles to remember the basic of things and can't handle busy and large crowds. Most of his school is done online and he can't hold the typical 9-5 job so I am the protector and his caretaker. I do not want to see him fail or hurt. I do not ask him what he wants or what he would like. He is different now and those things are just not obtainable to him.
Hearing Dr. Wilkes speak opened my eyes and changed my point of view. While all of us are talking around him and about him we are not really talking to him about what he would like. Chris has grown comfortable with that and looks to me for what should be done, especially when it comes to him. I have taken that control away from him. It wasn't supposed to be that way. Chris is still who he is with just some modifications to his personality now. I have to learn to let go of the fact that he will fall and he will fail but its ok. Hunter will fall and fail and again it will be ok. We will pick up the pieces use it as a learning experience and move forward.
 We have marriage counseling on Monday and plan on addressing this Person Centered Planning approach with her to see how we can do this for him. I also plan on bringing this up to his medical team. Chris wants to go to a regular university, who am I to say he can't? I am not but I have to learn to let him go back to standing on his own two feet. Who am I to say he shouldn't go to Starmark to learn to train dogs so he can help others in the community like him? I am not he has the drive and the passion to do it he should get that experience if he so desires.
I emailed Dr. Wilkes and expressed to her just how much what she said has changed my way of thinking.  I have posted her link:, if you are in the DFW even outlying areas in Texas and have the opportunity to hear her speak you need to try and go. She has been doing this for years and has some amazing success stories. I am so glad I was given the opportunity to hear her talk about this. It really has changed my course of action for my family. I guess it's true what they say, you never stop learning and you never stop growing.

Thursday, January 8, 2015

Fear and Projection

Yesterday my husband did something that I was caught off guard by. Normally when we make big decisions, especially in regards to him we talk. Just like I typically do on my lunch break I call to check in to see what he is up to. Since we are in the process of moving and I was about to go out of town for a few days we've been meeting at the house to accomplish some tasks, discuss the game plan and then head off on our separate ways. It's actually been sort of nice and refreshing to spend that bonus time with him during the day. I feel our connection has grown closer and we have bonded a bit more in that regard. Its a big plus for our marriage lately.
So, I gave him a call to see what he was doing and he told me he was at one of the local Universities enrolling in classes. You would have thought he was telling me he was climbing Mt. Everest blindfolded or worst yet, learning to take charge of his life without me. It was scary and it hurt at first. I feel a bit more protective of him because I know he isn't who he used to be. I feel partially responsible when things do not go right and he doesn't succeed. I start to project my fears and concerns of our son's special needs onto him. I never took the second to find the positive, the good in what he had done.
If you are still wondering why him registering in our local University was so "bad", you must realize his PTSD prohibits him from retaining much information and he struggles in large, enclosed group settings. He was currently enrolled at a local community college and did most if not all his school work on line and the classes he did take were relatively small so it was hardly an issue. The classes were not the best but it got us the BAH ( housing allowance) that we needed to make our payments on bills. However this go round he was struggling to get the go from this college so he took matters into his own hands and went over to HSU. In his mind it was/is the best way to ensure he can still get the payment every month and continue to further his education.
My initial reaction to it normally would have caused a fight. When he CALMLY reassured me he knew what he was doing, and things were going to be just fine I sort of hesitated and processed what was just said to me. He was reassuring me, he was taking over my role and taking care of my feelings, emotions and concerns. He was seeking my approval and I missed the boat, completely.
All I could think about was the overwhelming class sizes, the high demand of a university, the insane workload and any other issue that would affect his TBI and PTSD. I did the EXACT thing to him as I have worked so hard to avoid when it comes to our son. To let him branch out and be his own person and not hover. I was clearly in the worst way hovering. I was so caught up in my own feelings and thoughts I neglected his. Shame on me.
While traveling to Austin today I was speaking with my friend about the whole thing. She is a veteran and we were talking about the whole issue with the community college. I told her what happened expecting she would share in my fears and concerns and she didn't. I was by no means offended, it actually opened my eyes. She was right, Chris was right. He can do this and its going to be ok.
She told me if Chris felt confident enough to venture out to the big college then its showing us that he is learning to cope, and handle these stressors that have been so tough on him in the past. If he is capable of using rational thought to know he had to do something to keep our bills paid and it was logical then he was capable of doing so. I can't keep falling back on his diagnosis. Its not who HE is. He is my husband, the father to our child, step father to my children and a man who wants to take back his life he was slowly losing. He is turning a corner.
She told me these are all good signs. These are the things that I want. I can't get caught up in the whole PTSD life because I am going to miss out on my husband. The man I married. He wants me back to being his wife not his full time caretaker. I am in caretaker mode and struggling to shift down to wife mode. I have taken all the fears of what I read on the support groups I am in of how bad it gets but then I realize what I am reading from these ladies is that they themselves are caught up in the down side of PTSD. They live day by day with that diagnosis of their spouse and make it how they live. 90% of them see that they HAVE to be in charge, that they have to do it all. Some very well do. Its just a sad fact but I am not going to be in that percentage. I am going to be that one that starts to stand back and let him stand on his own two feet. He has made progress and I want him to know I see that progress.
I need to remember that and take these feelings and worries with me in April when we have our son's ARD meeting. I need to recall these things and think about the impact I am having on him. It's not just about me. Its about them. I need to unhook myself from this diagnosis thing and learn to let things happen as they will. If he succeeds then I am there to share in that joy and excitement, the milestone of something he accomplished. If he fails I am there to pick him up, push him and encourage him to keep moving forward. I need to live for their strengths and not their weaknesses.