Behavior equals communication. Behavior equals communication. Behavior equals communication.  People with intellectual disabilities do not choose to have bad behavior. There is some reason when their behavior changes.

Sean chose to stop attending his Transition Program in January. We supported that decision.  Our Regional Center (Dept. of Developmental Disabilities) granted him funding for a Day Program, which would provide a job coach.  Typically Day Programs get 60-90 days notice of a new client in order to have time to hire a job coach.  So Sean had nothing to do each day while waiting for his coach to be hired.

In February he started staying up late, and sleeping late.  I didn’t see a problem with this since he didn’t have any place to be each day.  He was playing video games and in his room at his Supported Independent Living Apartment (SILA).

At the end of February there was an Audit of the SILA by Community Care Licensing…and I was called for a meeting.

Turns out there’s a rule that a resident must take their medications in a two-hour-window each day, and there are no exceptions.  Because Sean was sleeping late he was missing his two-hour-window, and the auditor recommended they evict Sean.  In his defense they asked that he be put on a 30-day-warning to be able show that he could get up and take his medication within that window.  I tried to move the window to later in the mornings, but while the auditor was there he made them call the doctor who said the medication must be taken at 8am…so Sean’s window was 7am to 9am.

In March Rick and I called Sean every morning to make sure he was up and had taken his medication by 9am. He did fine until March 20th and he couldn’t wake up.  So I brought him home until April 1st when his Day Program began.  I thought once he had some structure to his day that he would snap out of it.  Interesting while he was home he put himself to bed by 10pm every evening, appropriately tired after his day.

On April 10th Rick and I took a long-planned trip to Africa.  Sean was mad that we didn’t take him and while we were gone he missed us and he was depressed.  There were several days that he simply couldn’t get out of bed.  Instead of comforting him, and understanding, the staff where he lived became punitive and treated him like he was a delinquent.  For those of you who have read my book know that Sean has a 6th sense and KNOWS when he isn’t accepted and wanted, and his reaction that that spirals his behavior out of control.

We returned from our trip and on April 29th I was told Sean was being evicted because he refused to take his medication 6 of the days in April.  During this meeting the nurse on staff mentioned, “Sean has no problem taking his nighttime medication on time.”

Sean has NO NIGHT TIME MEDICATIONS!  I asked her what she was talking about, and it turns out when his doctor renewed his prescriptions in FEBRUARY she made a mistake and changed one to PM instead of AM.  The medication she changed to PM is a stimulant…it increases mental processing.  She was wiring Sean up then sending him to bed…no wonder he was staying up late at night! He COULD NOT GO TO SLEEP!

This medication stays in the system for 12 hours, so by the time the morning came around it was out of his system.  When he doesn’t take it, he has anxiety because he can’t process everything going on around him fast enough.  When he has anxiety he acts angry, frustrated and will yell at people, use an angry tone of voice and storm off. 

Add sleep deprivation.  A perfect behavioral storm.  The nurse at his SILA should have co-related the behavior change to the medication change.  I had no idea that the change had occurred.  She assumed I knew.  February is when he started staying up late. February is when the time of his medication changed. WHO’s THE SLOW LEARNER???? 

The manager of Sean’s Day Program came to try to wake him up two different days. He was planning on telling me Sean needed a medical examination because he could see Sean was physically unable to wake up.  This man has met Sean 4 times and recognized there was a problem that was not behavioral, and the staff where he has lived for 7 months didn’t recognize his struggle.  This man also told me the staff had an attitude towards Sean, he said the staff had labeled him ‘A Behavior Problem.’  He sent me this short video about labels…and it fits Sean’s situation.

I didn’t raise Sean to be sweet. I hated the sterotype ‘they’re such loving children.’  I raised Sean to advocate for himself. But people don’t listen to him. They translate his lack of compliance as a behavior problem.  If he had been listened to at his home…a place that people with intellectual disabilities should be understood, respected and listened to then his medication error would have been caught, his frustration and inability to focus and lack of  sleep would have been understood and he would not have been blamed.  Behavior equals communication, nobody cared enough to figure out why his behavior changed, they were just afraid of an oversight agency citing them.

I was in the process of trying to get Sean another 30 days–with proper medication–when a new girl moved in…Sean was eating lunch with her then called her a ‘hippo.’   Bullies have been bullied.  Sean was being treated wrong by the staff, so he picked on the weakest person there, and we were told to pick him up immediately.

At the end of our trip to Africa we had to fly in an 11 seat prop plane around Mt. Kilimanjaro…in a storm…I knew I was going to die.  The entire 45 minutes I prayed and listed to praise music on my IPod.  What would have happened to Sean if Rick and I had died during that flight?

The moral of the story is nobody will love your child/adult like you do.  And I know now that I can never die.

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