Sunday, March 24, 2013

Where to begin

The past 4 days have been a mix of despair and hope and frustration.  On Wednesday morning I was annoyed.  My son was in a meltdown at school (again) and I had gotten a text that the principal wanted me to escort him to every class that day.  I put off the drive to the school as long as I could.  As most of you know we have been in family therapy.  We just went the night before.  Another night of my son not saying why he says the things he does when he melts down.  The focus was more on how we handled his meltdowns different as parents more then my son himself.  As we left my husband was like we need somebody who specializes in autism because this isn't getting us anywhere.  I agreed with him but was still willing to try this family therapy thing.  I was stressed to the max and felt it could be a good outlet for me.

I pulled up to the school and let his aide know I was there.  I sat in the office for several minutes alone.  I could almost feel something in the air.  I could see the behavioral therapists go in and out of the principal's office.  A voice in my head went this is NOT good.  I was hearing whispers of this needs to be on school letter head and she needs to know that her child whisper whisper whisper.  I still was not prepared for the clusterfuck that I walked into.

I was walked down the hallway to where my son was holed up grunting and banging inside a cupboard.  His aide was sitting on a chair in the doorway.  I was led into a conference room.  I knew one of them was carrying a piece of paper.  I knew whatever was on that paper was not good.  I could feel myself start to fall apart.  We are concerned they started with.  I caught a glimpse of what was on that paper and started to cry.      It was a letter informing me of my son's suicidal threats.  A kind of we need to cover our ass kind of letter that I needed to sign.  A letter that stated my son couldn't return to school until this matter was resolved.  In the middle of his meltdown and his normal I wish I would die, I wish I was never born , I don't deserve to be alive turned into something else.  Once before he has asked his dad to kill him.  The week before he tried to choke himself.  Since Sandy Hook our district has had armed officers in every school.  His officer was making his normal rounds when he heard my son banging and yelling during his meltdown.  As the officer peeked in the room my son turned to him and said "please just kill me and end my nightmare".  Those words spoken to that officer started a process that couldn't be stopped.  We ended up in the ER of a children's hospital.  The first plan was that my son needed to be sent away.  About 2 1/2 hrs a way to hospital for inpatient treatment.  No parents allowed.  Apparently my county no longer offers any services like this.  Apparently we were lucky to even get an assessment.  After a few hours and several long talks with intake assessors etc they got a good sense of how my son is.  They realized that sending him away would do him more harm then good.  But he needed help.

At some point the intake nurse asked again about our insurance.  Then she was like oh wait you have private insurance.   Then she said she knew a place.  For the same reason that our county no longer offered many services this facility no longer accepts medicaid or state insurance.  But we had private insurance.  This facility had recently changed it's name and it took about an hour for them to actually get contacted.  We left the ER with no real answers but just a phone number.  After several more hours of frustration because of phone lines not working on Thursday morning I had my first real good talk with this facility.  The first hurdle was our insurance.  After a few hours we got word that they would cover it but it is still going to cost us at least $3,000 out of pocket.   Now we are just waiting on paperwork.  Days later STILL waiting on paperwork.  Waiting on the records from the ER assessment   I have done and sent them everything they need from me and still we wait.  This facility sounds like a dream come true.  They specialize with children who have emotional issues, children who are struggling to stay in the class room and children with PPD which is the blanket under which Autism is found.  They do therapy in the morning and school in the afternoon.  He is going to have to leave his old school behind for now.  I feel like a broken record going on about this journey blah blah blah.  This is a fork in the road I never ever expected.  And it really isn't a fork in the road it is like we hit a roadblock and there is only one way around it.  No easy detours.  But then again Autism is rarely ever easy.

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