Liam Butler Update (Shillington, PA)

We will be following up with the children as they titrate off the medication and resume life without it. This is the first update to Liam’s story, see his original story click here: Liam Butler.

Transition meltdowns, aggression, agitation, frustration — it’s a large part of Liam’s life right now so it’s a part of all of our lives right now.

It’s not every moment, it’s not every day, but it is more than ever in the past.  Liam has always had a particularly hard time with transitions from one place to another or one activity to another.  Of all the transitions that have caused him angst, the absolute worst has always been from car to house.  With school transitions, he can be shown a picture schedule to know what is next and what is happening to ease the transition anxiety.  Eventually, he doesn’t even need the picture schedule, he just knows the routine and what to expect and transition anxiety is solved.  Sometimes when the experience is particularly new, we’ve had to add in food and drink to fully calm him.  This has worked for virtually every new place, new activity, new anything he experiences.  Unfortunately, coming from car (or school bus) into the house has always been the worst transition problem.  Nothing works to reduce this anxiety or lessen his meltdown.  No schedule, story, comfort item, nothing.  It was always just let him tantrum through it.  Sometime over the last 6 to 7 months, very quietly really, most of Liam’s transition to home anxiety and resulting behaviors disappeared.  He would fuss a little running up to the door and until the door was opened then he would calm upon seeing his blanket, juice cup, and favorite TV show playing.  I guess I hadn’t really paid that much attention to how much better transitioning to home had gotten.

And then boom, the rug was pulled out from under us.  My whole house is disrupted and in chaos more than any of us like or want.  We can’t come home from any small errand, excursion, activity without a 20 minute full crazy meltdown.  Liam’s sisters are distraught and getting caught in his aggressive outbursts. Yelling results from all sides making the meltdown and scene worse.  I end up in tears.  Liam is an emotional mess.  I have my daughter saying to me in tears “It’s not fair to me that I have to be abused because THEY TOOK AWAY HIS MEDICINE.”  And more tears come to my eyes as I think, no it’s not fair to her, it’s not fair to any of us.  We are all bruised, sad, and defeated.

So what happens now? We start doing less and less again. We take Liam less and less places because we know no matter what we do to try to alleviate his anxiety that comes with returning home, we just can’t. Social stories aren’t working, preparing the house to have all his favorite things ready isn’t working, staying out of his way when entering the house isn’t working.   So when the only option we seem to have is to wait out the meltdown, try to keep everyone else out of his aggression path, and pray that the explosion is a little bit shorter today, I prefer to just avoid the scene altogether and not take Liam anywhere more than necessary.  And that I know is not fair to my son and brings another round of guilt.

We took our last pill on May 28th.  We had the least amount of time to benefit from Arbaclofen and yet as each day passes, I realize more and more how much potential it probably did have for Liam.