Monday, January 9, 2012

Two Good Days

     It's been a few months now that Kevin has been acting out at his group home and his workshop.  The frustration of not being able to decipher what is wrong is palpable in me and in the staff.  I know that I want to throw things across the room every once in a while, but I can hold back the urge.  Kevin can't.  He punches the air and sometimes his fists collide with other people.  I worry about their safety, I worry about Kevin's peace of mind.  Just what is going on inside that brain of his - the one that knows all his colors, but can't tell the difference between the numbers 2 and 3?  I've asked dozens of questions in a myriad different ways to try to ascertain what is wrong.  The answer is always, "nuttin."
     His misbehavior started on weekends and spread to the weekdays, even manifesting itself with his favorite staff.  Now, finally, things seem to be reversing a little.  He's having good days during the week again. Is it the reward system of giving him a daily star for achievement of each of four criteria (not hitting, keeping his hands to himself, good manners and another that I can't remember) or the introduction of a new medication?  Is it the dinner he had last week with Vinnie, his favorite staff member, who left the group home a few months ago?  Or is it a combination of all of the above?  I long for a graph, a chart, some analysis that tells me the exact proportion of factors to pull together to elicit good behavior.  The tough fact is it's trial and error and it always will be.
     Upon hearing the news that he had two good days, yesterday and today, I felt relief fill me, revealing to me again how much I worry about him.  I try to remember that I am not in this alone.  My older brother and his family, the group home managers, the workshop team, his case manager - all these people want a happy and healthy Kevin.
     Tonight, as I was saying good night to Kevin on the phone, the staff member was egging him on from his end, reminding him to say good night.  Then she said, "Tell Sissa you'll talk to her tomorrow."
     And Kevin said, "Good night Sissa.  Me talk about you tomorrow."
     It's moments like this that make it all worth it.


  1. I'm sorry that Kevin is having a tough time, and I'm sorry that you're having a tough time. But I am happy to hear that the clouds are lifting a little, and as always, I love reading about your relationship with your brother - even if things haven't been great lately. Take it easy on yourself, Pat. As you wrote, you are not alone.

  2. Thanks AJ! I'm trying to stay human and resist the urge to be super-human. I miss you - hope to see you soon!

  3. Hi Pat - My name is Caitlin (I'm also in the FB Sibnet group). Your blog inspired me to create one of my own. I don't have anything posted yet, but I created it yesterday - which was a big step for me.

    I wanted to let you know that I know how you feel. My brother has those same behavioural problems, and it hurts so much to not be able to fix it for him. If you ever need to vent, send me a message, I will gladly listen with an open heart.

    Take care! And even though you are trying to resist being "super-human", you already are.

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  5. Wow, my eyes are sprouting tears like popcorn just now. I think it IS a combination of all of those things. I hold in high regard emotions like grief, loneliness, remorse--emotions you and I are struck with that perhaps your brother (and my sister) feel but cannot process. I think of Psalms, "How Long, Lord" or "Why, Lord" that this adult cannot read--or appreciate or correlate the stories of others with his own emotions. I realize he (and my sibling) depend on us--as well as their changing parade of caregivers (who do not know the history...and often fail to convey the triggers) to sort through the meanings and causes and influences. I LOVE reading this, and I realize how MUCH our sibs need someone to help them relate! I realize how much we all need help and support relating. Because what you've written helps me relate: Sometimes I push out of my mind the nagging concern, the illogical fear--the worry that has no answer. Sometimes a phone call IS enough--for ALL of us!

  6. Thank you Caitlin and Yanelli for your lovely words. WE can do anything when we support each other!