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.


kristi said...

I cannot even imagine how hard that was. Hugs!

Amanda said...

I want you to know that I am not a mother, but I have been following you through this whole thing via FB, A. I don't envy the decisions you have had to make at all. You have shown more resilience than many parents I know that don't HAVE an autistic or otherwise special needs child. The fact that you agonized so excessively over the decision in the first place is the truth of what a good mother you are. I support you 100%!

Maddy said...

As you know, I don't post the bad bits, but I understand [really].

leah said...

Sending you big hugs. YOu have a great line in this one - "this wasn't our fault, or his." It sounds like you made a really, really hard decision that kept the best interest of everyone involved at heart. Anyone who wants to judge should have to walk a hard mile in your shoes - some things have to be lived to be understood.

Anonymous said...

I've been a reader for a long time - years - and for what it's worth, I 110% believe you made the right decision, for him, for you, for Sierra, for your family. I believe that it was incredibly hard, but I know that as I read your post I relaxed a tiny bit for you and thought what a good choice I think this was. Hang in there-

Anonymous said...

Just sending my support, too.

Looking for Blue Sky said...

Very moving and very brave and I wish you the very best of luck xx

Lisa said...

I commend you for not running into the telephone poles, seriously, how many sad news stories have there been lately about Mothers shooting up the family then themselves. There is often too little help for Mothers who need it.

Melanie said...

It sounds very flip to say "if Mama ain't happy, ain't nobody happy." but it's true, especially for special-needs moms. When my sanity was dangling just out of reach a few years ago, I couldn't effectively parent or advocate for my son with autism, who's about a year older than yours. You have to make the decisions that work for you and your family for the best possible *long term* outcome. When your family is in a cycle of revolving poop (all types!), no one benefits. Congrats on having the strength to make the hard decisions and find a solution that works for all members of your family. Room to breathe is a beautiful thing, isn't it? *hugs*

Christy B. said...

I want you to know that there are those of us out here that stand behind you and support you and your family during both your happy and most difficult times. I know this was such a hard decision for you to make, but you did make the right decision for your entire family. I know that Sierra is thriving and when I have seen Jaymes he appears happy and content. It's like he is calm and focused. Please know that you do have friends that will support you know matter what, even when you have to make the most difficult decisions for your children. You know that I don't have a special needs child and therefore can't begin to understand what life is actually like at your house, but to be brave enough to make the decision you made is remarkable. You should be proud of yourself. I know that Jaymes and Sierra are proud of you and so am I. If you aren't taking care of yourself properly, how can you possibly take care of those beautiful children. It is not selfish to get yourself and the rest of your family back to a calm place, so that life there can be a wonderful experience for Jaymes and the rest of you. I, too, love your statement "this wasn't our fault, or his". It shows that you truly know in your heart this is the right thing for everyone and no one is to blame. Shame on those who do cast blame on you and try to make you feel guilty. Don't let them bring you down - even if they are your family and friends. Continue to look to those around you that show you support - we are out there. You have my support and I am willing to help you with whatever you need whenever I can. I applaud you for sharing your story with your readers, so they can learn from you and know they are not alone in this uphill, lifelong journey raising a child with autism. You are an inspiration - even to those of us without autistic children.