Today is Monday, May 20, 2013.
Today we told our daughter, Abby, our new plan for overcoming her OCD, Obsessive Compulsive Disorder. We had found a new therapist who we first met with in her office, just my husband and I and then she came to our home 4 times in 2 weeks. The therapist told us we needed to have “leverage” in order for Abby to work on the therapy to face her fears in order to move forward in her life and do the many things that she has not been able to do for several months. She spelled out some options yet the focus was on her working on steps and if she refuses to do so, then we do not accommodate her in the ways we have been doing.
Accommodate- what does that mean?
That is what Abby asked today when I laid out the plan. It means that her OCD is about irrational fears she has and because of these fears she has compulsions to do or not do things. Her fears have encompassed all aspects of her life to the point that she can not touch anything that we touch. She will not touch any glasses, plates, bowls or any of our silverware. We bring her food to her and give her a straw and open a box of plastic utensils and she carefully removes her spoon or fork in order to eat her food. If she is going to eat a sandwich, or anything with her hands, she wants us to prepare it without touching it with our hands, in other words, use a fork or tongs. And there is more….
But WHY- Why on earth would we do all these things for her and feed into her fears?
As simple as that question sounds and as simple as this may appear from the outside, the complexity of living with a child who has such extreme fear that she goes into fits of rage that include threatening to hurt herself and others. I do not mean the typical teen or preteen response to parents where a child is mad at his parents and says something to the affect of , “I hate you. I wish you were not my parents.”
I don’t know that I can even describe the nature of this experience and the extend of her fear and anxiety. Somewhere I read that having OCD is like having someone holding a gun to your back….all the time. And so the experience that Abby had when her OCD flared up, I would describe as her standing on a cliff with someone holding a gun to her back. We were there calling out to her but the screams of the fears were so loud that she could not really here us, but we were a mere blur in the distance. At times, she was able to see and her us and therefore able to turn into her true self but the rest of the time, she merely numbed the pain with distraction. Her biggest distraction, watching TV.
After our last appointment with the therapist last week, my husband and i have been talking and making a plan. We canceled our next appointment with the therapist because although we respect her experience as a therapist treating kids with OCD, she was not making a connection with our daughter. The therapist agreed to canceling the appointment so we could talk and make a plan. I needed to take what made sense based on our experiences and all we have read about OCD from the books we have read, the blogs and the forum I have been on hearing from other parents whose kids have OCD. I needed to take it all in, process it and apply it to our parenting style and in a way that worked for us in our belief system. I knew we had to implement this plan without threats or punishment or us adding fears other than the pressure of her needing to choose between doing the steps to overcome her fears or living with us not accommodating her- not accommodating OCD. OCD creates rules and the more we follow them, the stronger the OCD becomes and the more challenging it is to overcome it.
My husband, Don, and I made a list of all we do and all we avoid in order to accommodate her OCD fears. WE made a list of steps to take in order to address one of her fears, getting into the car in order to go somewhere. We then made a list of guidelines based on all the therapist had told us, for the steps to be taken. We typed all the parts up and discussed them together before we presented them to Abby today. We first presented her the steps to overcoming the fear of riding in the car which is something we have talked about before and even tried working on. It was also what was discussed last week when her therapist was here but she was unable to participate in helping us determine the steps.
How do you take steps to getting into a car?
Abby has not gone anywhere in the car since January 31, 2103. It has been nearly 4 months. She has looked at the car and has sat in my husband”s car- but only as a way to get my husband to wash his hands because of his interaction with our neighbor.
I guess I need to back up….
To the best of our understanding…. Abby’s current fear revolves around touching anything that was touched directly or indirectly by someone who smoked or by an unknown person that could have smoked. There is a chain of contamination involved in her fear in that if someone else touches something and then we touch that something, then we are contaminated And so, her family and the majority of our home is “contaminated” according to her OCD belief system.
We have not hugged our daughter in months!
We can give her a quick kiss on the lips, sometimes but no pats on the head, no hugs, no holding her hand….
The last time I remember holding her, was on the absolute worst night when we called 911 to take her to the psychiatric emergency room because she was trying to hurt herself and in such a place of rage that we felt it was beyond our control and far worse than similar episodes she had had over the past month. We felt it was our only option and knew we could not put her into the car. After my husband made the call and as the arrived outside, Abby made a sudden switch from a place of total rage to a place of complete fear. She was in tears and a complete panic state begging us not to let them take her away. I could not possibly describe the extend of her fear but I took her in my arms and began rocking back and forth as we sat on the floor. I knew I could not send her off in the ambulance because I did not feel that doing so would help her. I knew all along the nature of emergency psychiatric care and the likely procedures that would ensue and knowing there was no impatient OCD program here in our city to help her, I had always doubted the effectiveness of this method.
Does any of this make sense?
As I write all of this down, as I type these words to describe this experience on my computer, I wonder about the path we have taken. Yet, I know I have seen my daughter become herself again. She agreed to see a Psychiatrist, one we found with the recommendations of doctors we trust. And she began to take mediation and since that time, she has found a way to do many things with her feet. We can touch her feet and she can pet her dog with her feet, use the computer, draw and paint- yes- WITH HER FEET! She has played with toys and build structures with kinetics and blocks all with her feet.
The past few months have continued to be difficult, but her behavior has been manageable and rarely has she had fits of rage and when she has, she has learned to remove herself and has calmed down in shorter periods of time and even apologized to us after the fact- and by that I mean, she has come down from her room on her own and came over to us and has chosen to say, “I am sorry”.
I believe her medicine, an SSRI, the prescribed medication for OCD, as well as the various supplements that she takes and her gluten- free, egg- free, primarily citrus free but nutrient rich diet are all helping her. Yet, she has a long way to go. A long way to go in order to return to participating in the activities she loves, dance classes, girl scouts, getting together with friends, being able to attend kids dog camp this summer with her cousin- something that has been planned for a year- and seeing her family and possibly attending a family reunion, also an event that has been planned for more than a year.
Today, we went over the steps, the rules and the things we will not accomodate should she refuse to participate in the steps. We asked for her input on the steps because the idea is to start with something that brings the least amount of anxiety. Think about an anxiety scale of 1-10, 10 being the worst- and so each step is progressively more difficult for her. The idea behind this standard treatment plan for anyone with OCD and is called Exposure and Response Prevention, ERP, is to expose her to something that brings anxiety and sit with it until the anxiety lessens so she can “retrain” her brain to not trigger a fear response with these activities
She got mad. No rage, just mad and going on about how this isn’t going to help and she doesn’t know why we are going to make her do something that will not help her. I let her walk away for a little and then my husband and I went over the plan with her but she might not have fully listened to all the components. She kept saying, she got it- and we didn’t need to explain any more but continued in that it will not work.
We told her we will start tomorrow. My plan is to feed her breakfast as we have been, give her the medicine and supplements as we have been doing because we see a huge shift in her behavior about an hour or so after she eats and takes med/ supplements We already spelled out she would begin before going on computer. And so I hope she will watch TV as she does most days while she eats and for a little while after and then we can bring it up.
Why am I sharing this incredibly private information about my daughter?
I know there are other parents out there with children suffering from OCD, either undiagnosed or diagnosed.
I know they are looking for answers, for support and for reassurance in making decisions to help their child.
I am writing about this because I wish I could read about someone with a similar age child who has gone through similar experiences. I also know that writing about it will help me and hopefully in the process of that in turn will help my daughter. If sharing my experience could help even one person, than it is important for me to do so.