Tuesday, December 13, 2011

That post about decisions that I've been avoiding posting

I know it has been awhile, I've had this post written in my head for quite some time, but I've been putting off posting it for two reasons. One, I didn't want to be judged a bad mom or a bad advocate for my son, I didn't want my fellow autism moms to think I'm a failure. Two, I have a lot of friends and family who read this blog from time to time, and until very recently, I was too afraid that some of the more judgmental family members would twist things around and make our situation something it is not.

Like I've said, I've been afraid to post. But it really isn't fair to use this blog to only talk about the good times and the successes. It's not real to leave out the ugly. So I'm going out on a limb and just putting it down for the world to see. I don't care about the judgment anymore, and I can accept that not everyone is going to pat me on the back and tell me I did the right thing. I don't expect that. The decisions we've had to make as a family in the last few months are our own decisions, and for us they are the right ones.

Things with Jaymes had not been going well, as illustrated in my last post here. He was miserable and out of control, and I was exhausted, both mentally and physically. Sierra was unhappy, and Jason and I were fighting non stop. I was very depressed, and I finally hit the limit of what I could handle.

During all the chaos and depression I was going through, Jason and I were trying to decide what to do for Jaymes. He was not happy, and he was getting progressively more difficult to handle. It all kind of hit me in the face one day when I went into his room one morning and found him painting his walls with a cup filled with poop. I don't know why (I've dealt with poop and everything else known to come out of the bodies of small children) but it just clicked in my head and I finally did stop being able to handle it. Jaymes went to the Murdoch Center (I think I posted about that before) for two weeks, during which time I got to work getting myself ok. Unfortunately, things were just as bad when he got home. It wasn't his fault, or ours... It's just the nature of the beast we call autism.

While evaluating our options to help Jaymes and ourselves, our Easter Seals person talked to me about temporary therapeutic foster placement. The word foster is misleading- of course one thinks "foster" and it is assumed that the children were taken away by social services and that the parents gave up custody of the children. That isn't how therapeutic foster works. The child lives with the family (who are trained extensively), but remains in the custody of the parent. The parent makes all decisions, takes the child to appointments, and can visit or even pull the child out of the foster home at any time. I agonized over this. Even knowing all of the above information, the decision was the hardest one I have ever had to make. I thought about it, worried about it, cried about it, and stressed about it for a couple of months.

I got to the lowest point I've ever had in my life, and thankfully I had a wonderful doctor who basically hand-held me through the last few months. He hooked me up with a fantastic therapy program that I went to daily for 6 weeks- and that really helped. The staff there were amazing, and the coping skills taught were priceless.

The doc helped get my meds worked out, and we had a lot of sorting to do. I went on Abilify at first, and it worked wonderfully except that apparently it's got a rare side effect that I was "lucky" enough to deal with- the inability to urinate. I was not pleased when we figure this out, because really, in what world is it fair to have to choose between sanity or being able to pee? I'd really prefer to have both of those things! So, we dumped the Abilify and replaced it with Zyprexa, which works wonderfully. And of course, I can pee. Hooray! you don't realize what a wonderful thing it is until you're not able to anymore.

During the time I was going to the therapy program, I made the decision to do the therapeutic foster care. The application was long and complicated, and it took awhile to get the doctors signatures and everything else we needed done. I'm glad I was still doing the therapy program, because the week or so before and then after Jaymes was placed in the therapeutic foster home was a very hard time for me. I knew it was the best decision for all of us, but that wasn't much consolation. I felt like a terrible mother, a horrible person, and a hypocrite.

Jaymes is with a wonderful couple who love him. He loves them. He's got a big brother who is 11, and they have a little puppy that Jaymes isn't terribly thrilled with. He's got his own room with some fun toys that the family got for him, along with the toys I sent with him. He's doing well at home and at school. He's started using the toilet regularly, and he is writing new words at school.

At first, when I would come to get him to go do something, he would get upset- not wanting to leave Mr. Mark's house. That was hard to see, obviously I wanted him to be eager to come with me. The first few times went that way. But now when I get there to take him out (we do Wednesdays and Sundays right now) he is excited and relatively well behaved. He still has his quirks, and he is definitely still Jaymes- but he isn't aggressive anymore. Thank goodness.

I really believe that this was necessary for our family. When I was at my lowest, I would drive by a telephone pole and picture myself running the car into it. I wasn't in a position to be a mom during that time. Jaymes was unhappy and destructive, and every time he destroyed something, Jason and I would fight about it. Having a break for both ourselves, and Jaymes was necessary. It has given me the time to get my own stuff resolved and to give Jason a break. Sierra gets to live a reasonably normal life for a bit- that has been huge for her. Jaymes gets to be with someone who isn't completely burned out- and he is thriving.

The plan is to have him back home before next school year begins. We're going to slowly add more and more days that I pick him up and take him out to sort of ease everyone back into the swing of things. I'm working with a family therapist to get a plan in place, to change things around so that when Jaymes comes home, things will work out- rather than going right back to where we were.

It has been hell. I've felt that I cannot talk to my friends or family about any of this, because I just didn't have it in me to be judged harshly. It may not seem right to those not living in my home, but this was the right decision to make. It was a hard, heartbreaking decision, but it was not a decision taken lightly or jumped into. He may be in a therapeutic foster situation, but he is not "in" the foster care system. There is no risk of losing custody- I call the shots.

I am posting this because my blog has always been about being real. If I omit every bad thing that we're going through, the blog isn't real anymore. The point of my blogging is to help other parents out, as well as to vent for myself. Maybe one day someone going through the same hell will google "therapeutic foster care" and find this post.

I've learned that it isn't about making decisions that will please others- it's about making the best decisions for the family. If that turns out to bite me in the butt by upsetting family or friends... So be it. I made the right choice and everyone is benefiting from it.