Behaviors have been a part of our lives from the beginning. Because Jake cannot verbally communicate his wants and needs he sometimes resorts to hitting his face, cheeks and ears with open or closed hands, self hand biting, head banging or biting of others. These behaviors can be seen when Jake does not want to do something, needs a break, is tired or over excited. For the most part, the behaviors were mild until we attempted to take him off of Depakote that he was taking for the treatment of seizures.
Jake had tonic seizures as an infant. After several years of being under control with Depakote, we wanted to see what he was like without medication. Over a 6-month period he was slowly weaned off the medication. All was well until the very last dose was taken away. Jake began to bang his head against the walls, floors or anything he could find. As you can imagine, this was a horrifying behavior and we immediately reacted to his banging by running to stop and comfort him. This became a reinforcement of sorts, as he knew it got our immediate attention. What a “Catch-22” situation!
We knew that removing the Depakote played a big part in the escalation of Jake’s behaviors so we were hopeful that we could address the problem with medication. What we learned though, was that medication is only part of the solution for Jake. We also needed behavioral strategies and a complete sensory diet to help him with problem behaviors.
Jake was eventually placed back on Depakote, not for seizures, but to help control the behaviors. This seemed to take the edge off, but unfortunately the behaviors are now learned and are difficult to extinguish. With much research and hesitation, we eventually added Prozac in conjunction with the Depakote and this worked for a while. As with most medications we have tried, it seems to be less effective over time. We recently added Tranzene which has again taken the edge off of the behaviors. We continue to monitor and tweak his medications with the help of our neurologist and psychiatrist.
We wish we had solutions to the behavioral problems that interfere with our daily lives. This is our biggest challenge in raising our idic(15) child. Every behavior has a purpose, and for Jake, there are many reasons for his behavior, including the need for sensory input, getting our attention, communication, frustration, etc. We have tried to identify the source of the behavior and ease them with some very specific strategies. Sometimes these strategies are effective and other times they are not. We have found that we have to mix things up to keep them fresh and new to help extinguish the behaviors.
To help alleviate his head banging we began to proactively use a soft-shell helmet. If he is hitting or banging his head we say, “Stop!” and immediately use the helmet. If the behavior continues we don’t take it off until he stops. Once he stops, we praise him for not banging and remove the helmet. Affect of voice is important. We go through the same routine when he is hitting his cheeks.
We also padded his bedroom wall with a decorative area rug with foam underneath, as he would wake us up to get him out of bed by head banging the wall. Our goal was to keep him safe, while not reinforcing negative behavior. This was a very difficult situation. We began to leave his bedroom door open at night so he could get out of his room without head banging for our attention. This has worked to alleviate the head banging for the most part. Now, Jake wakes up, comes into our room, crawls into bed with us and goes back to sleep in our bed. The head banging has stopped and has now been replaced with sleeping with his parents! Getting him to sleep in his own bed and through the night is a huge challenge and we are still working on finding the solution.
First, we learned never to approach him from the front or try to pick him up when he is biting. Always approach from behind and try to restrain his hands from his mouth, and his mouth from your arms, shoulder or face. When biting occurs, we immediately redirect by placing a chewy toy in his mouth. We say “Stop” and show him a PECS picture of no biting (self or others—whatever is appropriate). Voice should show great affect so he understands biting is wrong. Social stories using Boardmaker pictures have also been helpful. We try to acknowledge and verbalize what our son may be trying to communicate during biting or head banging. “You are mad!” “You don’t want to!” “You want to stop!”
With the help of our ABA behavioral consultant and our occupational therapist, we wrote a “sensory diet” with strategies that are implemented proactively throughout the course of the day. This plan helps Jake regulate during his day at school, therapy sessions and at home.
While we are a long way from solving the behavioral issues, we have come to understand them better. By proactively using this sensory diet and strategies, Jake has become more regulated and less time is spent trying to help him recover after a melt down. We just take it one day at a time so we don’t become overwhelmed and we always look to others for strategies that work for them and for help and support.
Here is one last helpful note about behaviors:
Be calm and patient
Examine the cause of the behavior
Have a plan of action
Actively implement the plan
Vary the plan to accommodate the stimulation/need
Implement proactively, not reactively
Overreacting will stress you out
Remember things could be worse
Start again and repeat daily for extended periods of regulation