fretting

My daughter has developed some new compulsions. She started this thing with her hands a few weeks ago. She curls her hands into fists with her thumb tucked in. Then she puts her thumbs on the outside of her fingers. Then inside, the outside. She does it continuously. When I asked her about it, she said, "One, two, three, four is one, one to three, four is two." I realized she is making 4 movements then is counting that as ONE, then four more moments counts as TWO, etc. I asked her how much she is counting to. She said, "100, always 100!"

I must admit, it made me sad. It freaked me out. I saw the crazy. I saw her on TV in years on a "Obsessed!" trying to work through her OCD. I will also admit it made my OCD amp up like crazy. Since my primary OCD manifestation is ruminations, or worry, I began to worry about what people will think, how she will cope, if she will ever find a husband, will she be the crazy cat lady down the street, will she become a hoarder . . . see how bad it is? It sounds silly, but the progression is so seamless in my head it just takes on a life of it's own. I can laugh about it, but it still worries me.

When I see her doing it, I try to get her interested in something else. I will ask her to hold my hand, or give me a hug, or set the table for dinner. Usually that works. After a while she said, "You just want me to stop fidgeting." I agreed and she laughed.

Now she is doing something weird with her mouth. I think she is couting, but she is clacking her teeth together. She is making this crazy movement with her mouth. It is maddening. I am being full-out with this and simply telling her to stop. She usually does, but sometimes she replies, "I can't!".

My OCD immediately returns to crazy and then I stat freaking about how I caused the mouth thing to happen by stopping her from the hand fidgeting. Then I admonish myself for not allowing her to do that since it was less noticeable that the facial thing.

Do you see how maddening it all is? I can only imagine what this will all be like when she is a teenager!

sock it to me

My daughter has issues with socks. She hates them. They irritate her. It's not just the sewing across the toes, but it is also the weight of the fabric and how tight they are. She will not wear tights. She will wear legging tights since the feet are cut out.

We have found socks that she can tolerate for a small bit of time. I typically have not fought her about wearing socks to school. Even if I did get her to wear some, they would come home in her bookbag that evening. Last winter we had a couple pairs of stylish boots she would wear with skirts. It was cute, but leather knee high boots with no socks got SUPER stinky in a very short amount of time. We keep her shoes in the bottom of an armoire and no one wanted to open the doors to that armoire since it would smell so bad!

This year I decided I was going to win the Battle of the Socks. One morning she was being particularly obstinate and I said, "Do you want to wear a pair of mommy's socks?" I didn't really think it would work, but I thought it might divert her for a bit. She wears a size 2 in kids, so her feet are still fairly small, but it worked. She wore them willingly and much to my surprise she came home in them. The next morning she asked to wear mine again and I gladly agreed thinking I would take any short respite from the Battle of the Socks.

She came home that second day raving about the socks. I don't much like socks myself so most of my socks are thin and shorty's. We went upstairs and ceremoniously threw ALL her socks away and went into my room and split up my sock stash. She has worn socks without a fight everyday since! She actually asked to buy a pack of brightly colored adult shorty socks at the WMart that next weekend!

I win the Battle of the Socks!

reality

I feel like I have been kicked in the stomach. I was catching up on some of my regular blogreads this morning and I opened a favorite, The Bloggess. She was blogging about a regular commenter there who recently lost her husband. It seems her husband struggled with depression and committed suicide, leaving his young wife and two small children behind. I stumbled over to her blog at Random Ramblings of a SAHM, and read the story of the horror that began slightly over 2 weeks ago.

If you have read my first entry here, you will know that I struggle with suicidal thoughts. sometimes, if I am going through a particularly rough patch, I can easily envision crossing traffic without looking, or driving straight into a cement wall. I long for the peace that I think will come. I have said many many times that I don't think I will ever complete this desire, but I do think about it. There are times that I don't have any thoughts of this for months, maybe even years. But sometimes it is so strong that I can think of nothing else. I battle it. It is these times when I surround myself with positive things, my children and my husband. I try to relax. I try not to focus on the "crazy".

Today I think I came closer than I have ever come to understanding the devastation I would leave behind if I ever truly completed this task. I wept. I wept great, big tears at my work desk. I ache for this woman and her family. I actually feel sick to my stomach. I think it was important that I read this. I think every person who has ever battled this particular demon should read her blog. She gives a raw, and uncensored look at the pain, the grief and the questions. She is angry, and hurt and honest.

Jenny, The Bloggess, chose to share that she too struggles with OCD, depression and anxiety disorder. She says, "Someone once told me that he’d rather have “a broken, bed-ridden Jenny than no Jenny at all” and that kept me alive when I thought the world would be better off without me. But what he said was (and still is) the truth. Your friends and family want you…broken or not. Don’t leave. Speak out. Be honest about your condition to let others know that they can be honest with theirs."

So in honor of Tony, speak out. Tell someone that you are struggling with mental illness. Tell someone that you have thoughts that you can't imagine seeing the light of day. Tell someone. Don't leave. If you don't think you can, think of Tony, think of the wonderful woman and children he left behind. Think of the grief and the horror and the love he left behind.

For God's sake, speak.

expectations

I have learned over the years of dealing with The Oldest, with Fetal Alcohol Syndrome, that I need to lower my expectations. While reading a couple blogs lately, I have seen a common thread of parents who are rightfully upset that the child continues to make poor choices. They are saddened by the behaviors. They are tired of continuing to explain cause and effect. They are frustrated by the child not being able to control the impulses. They feel as though they have the same conversation every day. In some cases, they feel they make progress, but they go right back to the unwanted behavior the next time they are presented with the same choice.

I get it. I live it. I have been there more times than I care to think about. I have prayed the same prayers to heal my son's head. I have said, "How many times have we talked about this?" approximately 5 million times. It took quite some times for me to simply let it go.

A few years ago I came to accept what I cannot change. I came to accept the fact that he is not going to change. The organic brain damaged he suffered before he even took his first breath in this world will not be changed. When we adopted him, we accepted him as he was.

While I accept him and accept the fact that things may never change that does not mean that I cannot whole heatedly celebrate the smallest victories. It does not mean I give up and don't try to teach. It does not mean that I don't hold out hope that things will get better. It does not mean that I will not fiercely advocate for my child. It simply means I will not mourn when changes do not happen.

This change in perception has helped me cope day to day with the struggles. It has given me the ability to embrace who he is not who I hope he can become. It has taken the weight off my shoulders that I felt that I needed to make him better, that I was responsible for change. It has allowed me to not only LOVE him, but to ACCEPT the child he is NOW.

Does this make living with him any easier? No. It does not make the struggles easier. It does not make me happier to tell him the same thing I just did 3 minutes prior. It certainly does not make me ecstatic to find the Oreos hidden under the couch pillow. But it does take the pressure off me to change him.

I accept who he is and revel in the small steps he makes toward progress. I just don't expect them.

Does that make me a bad mother?

I don't think so.

social

Tonight I am stepping out of my comfort zone. I will be singing on stage. I promised I would engage more socially, and the friend I mentioned before asked if I would help her out at an event tonight. I agreed. I cannot believe I am doing this.

friends

For me, one of the most difficult parts of being the parent of a child with significant issues due to Fetal Alcohol Syndrome ( and I would suspect RAD and other traumatized kids) is not having a support network. Some of you are blessed to have families that are traveling different paths to bond with. That is not true in our case. We are very much alone.

It is difficult to do "normal" things with children who are unable to behave in a typical fashion. It is hard to explain that although he appears to be a typical teenager, he is still stuck at a five year old level. How do you correct your child for something that seems so tiny of an infraction to most people, yet you know that if it is left unchecked it is the inch that leads to the mile? You appear to be the overbearing and sheltering parent who is mean and controlling when you are just trying to give them the support they need to hold it together. It is hard. It is nearly impossible.

I have tried. We had contact with a family that was very close to us. I thought they understood. We spent many many hours together one summer. We ate meals together, we bathed our young kids together. We shared our lives together. I thought we had found true friends. They even began to spend some time with Dustin. The husband was kind of mentoring him. We found out very soon that they played right into Dustin's psychosis. Even though we had told them everything, they didn't understand. They saw us as overbearing and harsh. They believed his stories (that were documented by therapists as abuse flashbacks) and turned us into DFCS. It was a horrible blow. I was devastated.

It is easier to run to one another for support than open yourself up to that kind of scrutiny. It's easier to do it alone than attempt to build that kind of relationship with someone else. We are scarred. People just don't get it. It is not easy to understand unless you live it. I have met a couple families of children with FAS in our area, but they have typical IQs and less of a trauma background. Our case seems to be extreme and I think we frighten them. It's not easy.

There are two coworkers that I do get it on some level. One has a child with his own difficulties and a husband with similar problems. The other is the kind and gentle soul I mentioned in the last post. My goal is to let them in more. My goal is to foster some relationships over the next few months. I can get past this. I suppose if I can make my husband understand a bit more about my disorder, I can make others understand my son's issues.

Wish me luck.

understanding

A few months ago I was sitting at work with some coworkers. I have worked at the same place for many years. I have worked there before the diagnoses of OCD and after. A few of my coworkers have known me for a long time. A few others have only known me for a short time. One in particular is really good at listening. She and I have shared alot. I think I have helped her just as much as she has helped me. We have both grown tremendously in the time we have known one another. I'd like to think it is because of some of the time we spend together at work. I would consider her a friend, but not in the traditional sense (I suppose that is a post for another time) because I don't really have those like others do. She and her husband are in ministry. She is very giving and a really good encourager.

So, my co-workers and I were talking over lunch. The conversation turned to worry. They are all very aware of my OCD and all the issues we have parenting our children, because I am pretty much an open book. I made a comment about a certain kind of worrying I do and we started talking about how my OCD manifests. We had a really good talk. I began to really spell out what it is like to live in my head. I tried really hard to explain how my head functions. They got it. They explained how they react in the same situations. We talked about the differences. They not only understood but they commiserated and even asked questions. It was awesome.

I went back to my desk and began thinking about the conversation (because that's what I do, I replay conversations and try to see if I needed to add anything and make sure it is completely understood properly, I dissect it all) and I began thinking that if those people that I have known for so long didn't really understand how my brain functions with OCD then how could my husband? I decided I needed to have a very similar conversation at home. My first thought was, "I have said all those things before!" But then I realized the only time I have ever really tried to make him understand why I think the way I do, or why I say what I do is when we are arguing, and that is not the time for understanding.

I went home and had a very similar conversation with The Big Man (hubby). It went well. I felt like I had hit my stride. I felt like I could finally breathe. I felt like I finally lived with someone who got me. It was incredibly liberating. Since then things have been different at home. He is much more understanding. He doesn't get so irritated at the things I do. He is kinder and more gentle.

The way he used to react to me would've been completely fine for "normal" "sane" people, but I have a disorder. He never truly understood how that effects me. He never truly understood the worry, the nagging, the reasons behind it all. He saw it as "normal" people would as purely annoying. I never truly saw it like that. I simply saw it as him not listening, the problem was that I wasn't talking about the right things! A simple solution took far too long.

I am thankful for that day at work. I am thankful for understanding, both theirs and mine.

so far

How far have we come?

This schoolyear has been diffcult for my daughter, who the p-doc has come to call The Princess. She is still raging and tossing desks, but she is not running which is a bonus. She has been suspended about 7 times this schoolyear thus far, but the dear sweet principal at her school is so kind. He knows we are working with her and he knows my fretting and tells us each time about the progress she is making. Last time she raged toward the end of the day, she calmed down immediately and instead of having to call me they simply sent her home on the bus like they do every other day. It was major progress.

We did see an increase in her aggression with the 100 mg Zoloft so we retreated back to 50mg. We also could no longer handle her rapid weight gain and switched her mood stabilizer to Geodon from Risperidone in August. It does seem to work to keep the rage at bay most of the time although I think the Risperidone worked better. We are working on giving her some more skills to manage her rage better on her own as well.

The p-doc and I had what I like to call a "come to Jesus meeting" a few months back. He basically told me in no uncertain terms that she was a brat. The words he actually used were, "I see a real sense of entitlement in this child and I need it to be fixed, NOW." After a huge cry and a tough talk with the husband we reallized that we have definintely propogated that in both the bio-kids. I think we have pandered to them because life with the FAS brother is hard and stressful and we have tried to make up for that. In the process we "ruined" our kids. We decided then and there that changes would be made. This is where my OCD comes in handy. Once I get something in my head, I must make it happen. Things must be fixed NOW, there is no other option!

We immediately implemented a token economy where the kids fill jars with pennies. Pennies are given for kindness, chores, good behavior at school extra. Special amounts are given for not arguing, not backtalking, etc. Basically we are bribing our kids to be nice. It works. We have tried token economies in the past and they have failed, this one I think works because they see their progress in filling their jars. They are filling pint ball jars and when full they get a date with the parent of their choice. They will go eat at the restaurant of their choice and then visit the grocery store's coin counter and they get the pennies they have earned. So far, so good.

I had to revisit the p-doc in two weeks to talk about her progress. I really really REALLY wanted the husband to go, because I wantedto avoid the p-doc, but he would not allow me to slink away. I went and it was good. We talked about our progress and said he was proud of us. I told him that I understood his concern and I really needed to hear it. He said, "I only was harsh with you, because I knew you could make it change. I knew you would do better." Oh how I love that little indian man! We are blessed to have him as our psychiatrist.

More on the FAS child and my OCD manifestations later. Take care dear friends.