"Aye, There's the Rub"

Sometimes I feel as though I spend many hours of my day second guessing my actions, while parenting my autistic child.  In all honesty, I spend an only slightly lesser amount of time second guessing my actions in parenting my neuro-typical child.  It’s the minutiae of raising an autistic child that makes it so much more tedious than raising the neuro-typical one.  Those tiny, seemingly trivial details, that really don’t make a huge difference to a nuero-typical child (taking into consideration that a tiny dose of anything repeated a lot, becomes a big dose) can have a lot bigger impact on the autistic child.  Okay, so I think it’s example time, not to be confused with “Hammer Time” that is a totally different thing.

Every morning I try to time out Holden’s morning routine, so that I leave the least amount of time for him to get obsessed with anything.  The longer he has time to think about what he wants to do, the harder it is to pull him away from said activity.  This is especially true if in his own mind it becomes a very detailed agenda.  He then has trouble breaking from that agenda, he has formulated in his own mind.  So to make my life, and his, easier I try very hard to keep the morning flowing, no down time.  Of course, he doesn’t always wake up at the alarm, and sometimes other things come into play, like the bus being late.  This morning was flowing pretty good.  It is only his third day back in school, so I am trying to get the timing right still.  He ended up with a 5 minute window of time, that I thought had gone by without issue.  We went outside to wait for the bus at the appointed time.  Everything was going “normal”.  Then he began to divert from the norm.  He was riding on my shoulders, a very common place for him to be while waiting for the bus.  I think is gives him a closeness with me before leaving for the day to go school, and he quite enjoys it.  He began to direct me back towards the house while asking for “Little Thomas”.  Holden goes through cycles with this, but for a long time has liked Thomas the Tank Engine.  His battery operated Thomas disappeared recently, and while visiting him, his mom suggested it might be in the backyard somewhere.  I assumed he wanted to look for this Thomas train.  I told him we would look “after school”.  He began to get agitated, and wanted to look immediately, the problem was the bus was already coming, at that moment we both could hear it.  His agitation increased as a result of the bus coming.  Here is where my actions led to me spending the next few hours second guessing myself, and writing this blog.  He continued to ask for “Little Thomas” and didn’t want to get on the bus.  After making sure I had his attention, I again told him we would look “after school”.  He seemed to understand this and went on the bus.  However, it soon became clear to me that he thought I meant “first get on the bus, than I will go get your train.”  I would never bribe Holden with something, to get him to do anything, then not give him the thing I promised.  As soon as I went to get off the bus, he asked the the doors to the bus remain open.  That was when I knew he was thinking I was going to get the train.  I again explained to him that we would look for the train after school.  I got off the bus, and as soon as the doors closed he got upset.  The bus driver took this as his cue to go, and drove away.  While I walked back to the house, with a very bad feeling, and emailed his teacher about the situation.  I went into the house, and looked into the backyard, and there was “Little Thomas” looking at me, with a look on his face that clearly said I was the worst father ever.  About an hour and a half later I received a call from the transportation department, informing me that Holden had a difficult time on the bus.

“Aye, there's the rub”.  Here is where it gets complicated, looking back and analysing my actions.  I should have realized when he said “Little Thomas” he did not mean the battery operated Thomas, because he calls that one “Metal Thomas.”  He had clearly looked out the sliding glass door this morning, in his 5 minutes of nothing, and seen “Little Thomas” and decided while waiting for the bus, that he wanted him.  I could have just let Holden run into the backyard, and he would have gone straight to “Little Thomas” and brought him back.  At that time I could have explained that Thomas had to stay home, and he could play with him when he got home, after school.  BUT, that is not what we are trying to teach him in therapy.  We want him to be flexible when these issues come about.  He has to learn to fight that immediate impulse to do something, and wait till it is okay, or perhaps not be allowed to do said impulse at all.  So had I given in to his impulse to get “Little Thomas” I would have been enabling him to fulfill that impulse, instead of making him be flexible.  Because there are a LOT of things that he can’t have or do, that he would like to do, he has to learn flexibility.  There are times when I could prevent a meltdown, by letting him fulfill his impulse, but I am just going to create a bunch of future meltdowns, by not teaching him to be flexible.  

So then why all the second guessing?  There are two things that I really didn’t like about how this all played out.  I don’t like that Holden thought I was going to get his train, once he sat down.  Like I said, I would never bribe him, then not give him the bribe once he did the thing I wanted him to do.  I also wonder if I should have allowed him to fulfill his impulse, so that his day at school was better.  That is a double edged sword.  Yes, he would have had an easier time this morning, but it would potentially make it harder the next time a flexibility issue came up at home.  Do I sacrifice home life, to allow for better school experience? Or do I stick to the plan, and help him learn flexibility EVERYWHERE? I think he needs to learn it everywhere, but it sure isn’t fun sending him off to school, knowing that he will very likely a bad day!

"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.