Sunday, June 9, 2013

"Time keeps on Slipping"



In deciding to write this new blog post, there was much debate, within my own mind, whether I should just jump right back into blog posting as if there hadn't been a huge gap since I last wrote in this blog.  Obviously, I decided that some explanation was necessary.  No, Holden has not suddenly become “normal”, he is still very much autistic.  I had been focusing my attention on a much bigger writing project.  One that took up all my writing time. Now that summer has arrived though, and my time to write has become much more finite, I have shelved that project till I can write with more consistency.  The thru line of thought is much more important in that project, than in blogging.  I also had a friend who is near and dear to me, remind me that it was time to blog by her own example.  So here I go a blogging once again.


Holden’s in-home therapy has once again shifted into the hands of a different vendor.  Our last vendor, for the most part, stopped doing in-home therapy.  One of the reasons was the change in the insurance laws.  As is always the case, the best of intentions were in mind when this new law was put into place, but the insurance companies have quickly found ways to manipulate it to their benefit.  That however is not the topic of this blog.  


Holden’s old therapy vendor had it’s issues, but it brought two therapists into our lives, that continue to touch our lives to this day.  They were two very special people that we all came to love as family members.  Ironically, even if we hadn't had to leave that particular vendor, we would have had to say goodbye to these two very special people anyway, as their own lives were going to be carrying them to different places.  I can not even begin to express how much of an impact they have had on all of our lives, and their impact on Holden’s life is truly immeasurable.   They are missed dearly, and will always be in our hearts.


Holden’s new vendor and therapists have been working with him for a few months now.  They have been doing a great job, and it is a lot more intense than the last provider was in philosophy and implementation.  This is great, but (yes there is always that damn ‘but’) it has also meant that Holden is put under more pressure and greater demands.  As with all new and challenging things, they seem to get worse, before they get better.  This doesn't mean that after a week or two, Holden will adjust to this new program, and things will be great.  It means that the intensity and demands will continue to rise, as he progresses.  Again this is great, BUT...!  


I have always been very involved in Holden’s therapy, especially if Holden wanted me to be.  This is certainly still true, but there was a situation recently where I became the thing that Holden needed to get past.  As a result I was asked by Holden’s new, and very capable therapist, to remain inside while she worked through this issue with Holden in the back yard.  Let’s remember this is Holden, so it’s not like the issue is something like me arguing with Zane why he needs to shower everyday, and Zane trying to plead his case for being allowed to smell bad all summer long.  When Holden has an issue, it means screaming, yelling, kicking, flopping on the ground and crying.  So I am trying to do what is best for Holden, and stay in the house, while he screams for “daddy” and is crying and getting very upset.  He is melting down, and constantly calling for me the whole time.  Any parent knows that horrible feeling of having their child scream for them.  Sometimes it is a necessity though, like dropping said child off at daycare.  It rips our heart out to hear them cry out for us, and be sad, and we hope, with all of our heart, that 5 minutes after we leave they are fine.  Well, with Holden, that has not changed as one would think it would for his age.  I can tell you, that his age has not decreased the heart ache at hearing him cry for me either.  I know that he is in good hands. I know that he is being made upset right now, so that he may be more equipped to handle these moments in the future.  None of that decreases my want to put an end to his misery.  

What I know though, is that my time on this earth is finite.  It is a reasonable assumption that Holden will be around long after I am gone.  The more he can advance now, while I am around, and the more he can advance, while he can still get services, the better prepared he will be for when I am gone, and he doesn't get these valuable services.  Because research has told the powers that be, that after a certain, predetermined age, “these kids” stop developing, they cut off services after that age.  Holden has not even come close to reaching the point where he has stopped developing, but in terms of his age, he is getting frightening close.  So as much as it feels like someone is stuffing their hand down my throat, ripping through my esophagus, tearing my diaphragm open,  reaching into my rib cage, and ripping out my heart, I need to let this person do their job.  I plead in my mind for Holden to understand the demand being put upon him. I hope that he figures it out with as few of these episodes as possible, but he has to figure them out, and as much as it is SO wrong, the clock is ticking.