Mark update - April 10

Mark is coming home next Thursday. While we're not yet sure that's the best thing for him, it is what's happening.  Here's where we stand right now and the brief version of how we got to this point:

As most of you know by now, Mark was admitted to the Sea Harbor program at Central Florida Behavioral Hospital on Saturday, March 28.  This has been a tough time for us all.  As difficult as Mark's behaviors had been - the head banging and biting himself with greater frequency and intensity as well as the aggression towards others - the separation has been almost as difficult to bear.  Thankfully we are able to call daily to talk to Mark (although he hates having the phone put up to his ear) and get frequent reports from the staff there.    Thursday we went for our meeting with his "team" there (therapists, etc.) and were told he would be discharged on the following Thursday.  The reason for the earlier-than-expected discharge?  Insurance.  Contrary to what we were told upon admission, our insurance will not cover Mark there.  They said they agreed to admit him because of the crisis situation and had hoped that insurance would pay some of the expenses.  Unfortunately, that is not the case. And the per diem rate there is beyond our capacity to pay (roughly $550).  Realistically though, we knew Mark would not be there beyond the 30 day initial period we anticipated our insurance covering anyway.  We simply saw no long term solutions coming in such a short time and we knew it was not a feasible option to pay $16500 for an additional 30 days.  We also were concerned that the program possibly over-relies on medications to handle/temper behaviors.  Reinforcing this idea for us was the sudden increase in medications upon arrival (doubling one med twice in the first day and a half), and what happened today: Mark has his biggest meltdown yet - the sort we had been seeing with all-too-common frequency, but had not been on display yet at Sea Harbor,  He was apparently attempting to bite anyone in sight and was also biting himself and head-banging.  Their response?  A shot of Ativan.  Ativan might get them over that brief crisis, but we don't have access to Ativan shots here - nor could we or would we use them the 5, 10, 15 times per week they are sometimes needed.  While possibly necessary, giving Mark a tranquilizer doesn't really solve any of Mark's problems.  It's a band-aid of sorts.  And that is really all we have done these past two weeks - apply a band-aid to a problem that still is critical.  On a positive note, Mark has done well in the school setting there and has greatly benefited from the intense one-on-one attention and therapy he has received.  We will miss both.   We have some tough decisions to make in terms of Mark's school.  We simply cannot return to the situation he had been failing in for so long.  We also got some new ideas and suggestions we will be exploring in the days to come.  We will be seeing an audiologist (to see if there are any measures we can take to limit Mark's exposure to certain noises and frequencies that invariably lead to behaviors), and we will be seeing a psychiatrist to address Mark's medical plan (since he has been under the care of the psychiatrist at Sea Harbor but will no longer be once discharged).  Ironically, after months and months of petitioning the folks that control the flow of funds that Mark receives for services to move us up a "tier" so that we would qualify for an intensive residential treatment program, we were finally approved - one week AFTER we enrolled Mark at Sea Harbor.  We were offered a placement at Carlton Palms in Mt. Dora.  This program/facility does accept Mark's APD funds and would be fully covered for us.  Cecilia and I visited and toured on Thursday AM before our noon appointment at Sea Harbor.  I'll have to give you the short version here ... we just don't feel that's the place for Mark for many reasons.  They require a one-year commitment up front, allow no visitors or calls for the first 30 days, use physical restraints liberally, and we simply were left feeling/thinking  that the program was just not right for Mark or us.  More than anything, we want Mark at home and well.   So far, we can only achieve the former.  The bottom line at the moment seems to be this: Mark's stay at Sea Harbor has given his body a well-needed break.  He looks better and his bite marks are subsiding and his head-banging has diminished.  We have some new ideas to try and perhaps a couple new insights.  But we have no solutions.  Very little, if anything has substantively changed.  We look forward to Mark's return, but know that we still face all the same issues as before.  

There is so much more to tell, but we are both so emotionally and mentally exhausted from it all, that it's hard to write or put into words.  Many of you have asked for an update and have assured us of your continuing prayers.  We really appreciate that.  I hope this gives you enough to know what's happening (at least in the big picture) and guides you in your prayers for us and Mark.  There is nothing besides caring and praying that anyone can be doing right now.  Thanks for asking, though.  I'll try to keep you updated more often here.  

Thanks again for the notes, emails, calls, and cards.  I apologize if we have not responded or replied to them all, but each has meant a lot to us.