There Are No Experts

My son Cody is on his eighth day without aggressive behavior. This is miraculous considering a little over a week ago he was aggressive (hitting, punching, biting, and throwing things) for more hours a day than not. When he came home on the earlier this month from his sixth stay in an acute psychiatric hospital, his level of aggression had escalated. The only thing they did was add another psychiatric medication – his fourth.

I am very in tune with Cody’s moods. I noticed that he woke up in a happy mood most mornings, but shortly after taking his medications, he’d become aggressive. Knowing he’d gotten worse since starting medication two years ago, I made the decision to take him off all medication. I removed one at a time so that I could track what medication was causing what side effect. The Prozac was causing severe anxiety causing him to be afraid of everything and everyone. He was so anxious he bit his nails until they were gone and then started on his toenails. The Adderall and Tenex were causing his aggression level to increase exponentially. Risperdal seemed to have no effect at all. Two days after stopping the meds, Cody was still aggressive (though less so) and started behaving bizarrely. When he told me the monsters he sees were getting worse, I started him back on the Risperdal. He’s been aggression free since.

Cody still has a high level of irritation and teeters on the edge of aggression nearly every day. He becomes focused on something and must have it immediately. If he’s told he cannot have it, he will repeat what he wants over and over again until he works himself up into such an agitated state he becomes aggressive. However, off medication, he seems to be able to recover (if I intervene) before getting to that point. For example, this morning he wanted a piece of candy. I told him he would have to wait until after lunch. He repeated “I want a piece of candy” nearly a hundred times, getting more and more agitated each time. Creativity and distraction are the magic keys to getting Cody off his repetition train. Knowing exactly when to intervene or when to practice planned ignoring is equally important. However, on medication, no amount of creativity, distraction, or planned ignoring worked. This morning, I was able to distract him with a spider on the wall and an in-depth conversation on spider webs. This led to searches on the laptop for images of spider webs and him drawing spider webs in his art journal. Crisis averted.

I do not recommend a parent take their child off medication without their doctor’s approval and guidance. I was in a crisis situation where I had to act quickly. Next week a bed will open up for Cody in another residential facility that is two hours away. Since I no longer have a car, that distance would be devastating for us both. I needed to be sure I had no other option before agreeing to place him back in residential care. I have no access to a psychiatrist as Cody has been on a waiting list since May, but I did talk with his therapist regularly after taking him off medication. I took a huge risk. If Cody’s condition had worsened, I would have been held responsible. My decision was based on the knowledge that Cody had not been responding to medication over the last two years and his behavior had actually worsened since being medicated. The most important thing was for me to know my son’s behavior off of medication so that I could make the most informed decision possible about the next step in his care.

So far, the results have been miraculous. There are other things I am doing that are making a positive difference, too. This is not simply a case of over-medication. Most of these changes involve me not my son; things like changing my way of thinking, my attitude, the words I use when interacting with Cody, practicing an unbelievable level of patience, and increasing my knowledge of his condition. The most important thing I have changed is my belief in myself. Cody has been under the care of trained professionals since 21 months old. I expected them to know the right thing to do and to pass that knowledge on to me. I trusted them when they told me what interventions were best and what things I needed to change. After recently being told by a fourth therapist that he didn’t know how to treat Cody, it finally sunk in that no one is an expert. It was time to be bold, take a chance, and be the expert I’ve been waiting on. This doesn’t mean that I don’t need help or that I know everything. It means that I will no longer leave the decisions about my son’s care in the hands of anyone other than myself no matter how many mistakes I make along the way.

In the next post, I will discuss in more detail the other changes I have made including a song I made up that teaches Cody the right thing to do, but also makes him laugh even when he’s really angry. Until then, may you focus on the positive in your life even if, at this moment, the only positive is that you are still alive.

*Cody and I are in desperate need after being involved in a car accident. If you would like to help please click here: www.giveforward.com/keepcodyathome. I would be so appreciative if you would share this link with others. Thank you!

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One Response to There Are No Experts

  1. Pingback: My Spoiled Brat Self, a Wise Man, a Revelation, and a Song | Mothering Asperger's

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