Fetal Alcohol Spectrum Disorder Eval

David and I are traveling six hours tomorrow to get him evaluated for Fetal Alcohol Spectrum Disorder.  This is a second opinion.  At 15, he likely will not be able to get any services for the diagnosis.

But like I have said in the past, I don’t want anyone to say we haven’t tried to do everything that we can for him.

I made arrangements to pick up from the residential facility where he lives. I purposely didn’t tell him, and I told the staff that we weren’t going to tell him.  He obsesses about things.  So why cause him stress unnecessarily?

Guess what?  Someone told him what was going on tomorrow.  It isn’t the end of the world for me that he knows, but you would think his world is ending. I have talked to him more since Friday than I have talked to him in the last three weeks.  I love that he reaches out to us, but don’t want this to be the only reason he does so.

I am not moving him to another facility, this is his second facility in a year, it is supposed to be a transition to home, a step down facility.  He moved there a couple of weeks ago.  During intake, they told him he would likely be home in six months.

This is not for them to decide all by themselves.  That is a team decision, and will be addressed in team later this week.  More on that later.

How hard is it for professionals to understand that parents have some idea of what their kids are like?  Even if they are in a facility?

The frustration

I am frustrated that the professionals in these facilities don’t hear me.  If they don’t hear me, how are parents who don’t know how to make themselves heard able to get their points or concerns across to the professionals?

My bet is that they don’t.  I find that troubling indeed.  So what can be done about it?  How do we change it?  This isn’t the 1800’s where parents put their kid in a facility and walk away.  Heck this isn’t the mid 20th century.