"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.

"All in All"

I am doing something different for this blog.  I am starting it, with no idea what I am going to write about.  In reality, it doesn't really matter, because I begin each blog with an idea of what I am going to write about, but just like writing fiction, I soon find my fingers have taken over.  Of course the best things in life happen this way, organically.  We can’t force our will on the world and expect it to succumb to our wishes.  Sometimes though, life sends us such a treat, a little nugget of perfection, that we didn't anticipate or expect, and it is so awesome.  The key to it, is being open to it, allowing it to enter our soul, and speak to us.  If we are too stuck on our path to notice the beautiful flowers on the side, how are we going to notice when a side trail turns up, and has great things to offer us.  Certainly there is something to planning, and the old saying failing to plan, is planning to fail, has some truth to it, but we also need to be open to the unforeseen.  Sometimes those things are what are meant to be.

This is the best approach to take with Holden, because there is no anticipating every possible contingency.  There are days where I am sure he is so happy, and perfectly in sync, that I could throw anything at him, and he would be flexible.  Of course these are the days I end up frustrated and baffled, and Holden ends up melting down.  What I have begun to realize though is it’s not just about trying to anticipate every possible thing that could come up, it’s also about seizing those moments that come up, and can become part of the plan.  The complete unpredictability of Holden is what makes him predictable.  By accepting this idea, it becomes so much easier to work with him.  It’s about responding to him, and not reacting to him.  It’s about listening to him, and not telling him what to do.  It’s about watching his cues, and learning to anticipate when we are veering off course, and when we are simply stopping to appreciate the flowers on the side of the path.  To let him chose the path that goes off the main path, because in the end it leads to the same place, just with a little change of scenery.  Certainly there are times when the path leads to danger, and then it’s time to reason with him, and show him why that path is a bad choice, and show him the alternative paths that are open to him.  Let him choose the alternative that best suits him.  

Of course this approach to Holden also works on Zane, with even better results, because it teaches him that his choices have repercussions.  How can we expect our children to learn to be responsible, if we never give them choices, and they don’t understand the responsibility in having those choices.  “With great power, comes great responsibility”, what greater power in life is there than choices.  Our life is what it is, because of the choices we make.  Each choice we have, is an opportunity to better ourselves, or make life worse.  To show our moral fabric, or lack of it.  To be the person we want to be, or take the easy path.  To practice what we preach, or be a hypocrite.  That is what I want Zane to understand, not to mirror my beliefs, morals, and ideals, but to understand that he is defining his own by making the choices he makes.

As an adult, I make choices everyday that have repercussions on not only myself, but my boys and countless others.  I don’t always make the right choice, especially when it comes to the boys, but that is called being human.  I would rather make choices that turn out to be mistakes, than not make choices at all.  

Summer Time

It has been my experience that most kids have a few favorite times of year, certainly Christmas is high on the list, Halloween, their birthday, and of course summer vacation.  Certainly there are other dates and times that are special to kids, but these are some of the most loved times.  I think looking back on childhood, a lot of us would also consider these to be significant times in our lives.  

Holden is one of those rare kids, that does not do well over summer.  It’s not so much that he doesn’t like summer, as much as he struggles when he is out of school.  He loses a lot of the structure he so craves, and finds himself wanting for stimulation: sensory, emotional, and intellectual.  

In preparation for this years summer break, we, of course, enrolled Holden in extended school year (summer school in other words) like we do every year, but that is almost three hours shorter than the regular school day.  I also enrolled him in a special summer camp, that had one on ones available to a limited number of developmentally disabled kids.  I was able to put Holden in three weeks of this camp.  I thought this would really help him have some of the structure he wasn’t getting as a result of being out of school.  Unfortunately it did not fulfill his needs, and it became something that he only wanted to participate in certain aspects of.  It was often difficult to get him to go, and I had to stay with him sometimes for over an hour, before he was ready for me to leave.  It was a good experiment, that unfortunately turned out to be the wrong idea.  

For the rest of summer, I dedicated myself to giving Holden all the stimulation he required.  I was in the proverbial catch 22.  I could leave him to his own devices, and become very frustrated and exhausted trying to keep him out of trouble.  Or I could dedicate myself to giving him the stimulation he needed to keep him out of trouble.  This too was exhausting, and sometimes frustrating, but the difference was a happy Holden.  There is no question that Holden happy, and not anxious, and not getting into trouble every second, was much preferable to the alternative.  I just had to drop off the face of the earth for a while.  Even though I was exhausted and sometimes frustrated, it was so great not to be fighting with Holden, having power struggles with him, or literally putting out fires, floods, and mayhem.  

I think next year I will try to find another summer camp, to take up a few of the weeks of no school.  This time I will be searching for much different parameters than what I found this year.  I also will take on the task of being there for him the rest of the time, and create the environment that I now know helps him so much.  There is no question that Holden had his best summer ever.  There is no question that his transition to school has been way smoother.  He has already had to deal with two different bus drivers, and a camera on the bus now, that sometimes works (red light on) and sometimes doesn’t, and he has handled these things much better than I would have thought.  

So I will not make excuses for myself, for having not written a blog in way too long, but I will take shelter in the thought that I succeeded in helping Holden have his best summer since being in school.

"War"

In times of war, victories always come at a great cost.  Loss of life, loss of property, and sometimes the loss of a way of life.  The civil war was an extreme example of this, as every single casualty was an American.  Every victory was bittersweet, as fathers fought sons, and relatives of every other kind were forced to take up arms against each other.  So many victories were empty victories, that were necessary to keep the country united.  Even Sherman’s march to the sea, that killed the least amount of people, still completely devastated a way of life, and broke down the south’s infrastructure so much it took decades to recover.  None the less, it was a necessary change, the world could not continue doing things the way they were.  The status quo was broken.  

In many ways, having an autistic child is about fighting wars, that have bittersweet victories.  There are all of these strategic moves that need to be made in order to achieve the support that our children require.  It is an emotionally devastating process.  One example is evaluations.

When our children are evaluated, we actually want them to perform poorly.  I have heard of parents not feeding their children breakfast before an evaluation, so they perform especially poorly.  I myself have smiled internally during an evaluation when Holden does show his true colors.  Because we as parents are trying to convince the school, the county, the state, that our children need help beyond the norm.  With the government trying to tighten its wallet any way it can, stricter guidelines for these services are enforced.  At the same time, when we receive these evaluations after the fact, and we read how poorly our child did, it is a very empty victory.  At the time of the evaluation we are elated that our children showed the need for help, but when it is written in a report, and expressed in such detail, it is sickening and depressing to read.  It’s hard enough watching the neighbors child, who is two years younger then our child, be able to outperform our child in every social way possible.  To read it in print, in a sterile voice, that is apathetic to our beautiful children, that we know to be so much more than they appear, is like a punch to the solar plexus.

I recently had one of these empty victories.  Holden’s original diagnosis was made when he was four years old.  The verbiage used was such that with the new tougher guidelines for services, I felt could potentially harm him.  Anyone evaluating him now would certainly not debate his disability, but the diagnosis itself was suspect.  Since we had moved and were under a new regional center, I asked that Holden’s case be looked at again, from the diagnostic standpoint.  The regional center agreed, and made an addendum to his diagnosis that made his need for support much more clear.  Certainly I am happy to have that security for his benefit, but it just further exemplifies his deficits.  It is so very hard to feel any joy in this victory.  Was it necessary? Yes!  Do I enjoy reading it? NOT ONE BIT!

"Start Clean"

They say cleanliness is next to godliness, and I tend to agree to a degree.  For instance I believe in taking a shower everyday, but I have been known to not shave everyday (uh, sometimes more like every week).  Likewise I never wear dirty clothes, however I tend to keep clothes long past retirement age.  I think hygiene is important, and despite often looking ragged, I rarely smell ragged.  Even when I was touring full time, I would always find time to take a shower everyday.  I have even been known to take a shower on the bus, while driving down the highway.  I strongly encourage people not to try this, as it is both dangerous, and not a very satisfying shower, but well worth it after a long day of sweating under the lights.  I should state I toured full time in the time of high powered incandescent lights, the new (not that new anymore) LED lights are so nice, and let off almost no heat.  Well as you can probably guess this is leading up to something.

Holden has recently become quite obsessed with doing laundry.  The thing is, he often doesn’t want to wait for dirty laundry to be generated, and will start pulling his clean laundry out of his drawers and fill the laundry basket.  He often bipasses the washing stage, and tries to put them straight in the dryer.  To even further complicate things, he wants to put laundry detergent on the clothes he is putting in the dryer.  He also obsessively cleans the lint trap several times per load, often trying to stop the dryer to check the lint trap again and again.  This has become a daily battle for us.  I never let Holden out of my sight for very long, and to me very long is around 90 seconds.  That is the maximum I will let him out of my sight for.  Believe me, in 90 seconds Holden can fill a laundry basket in the bedroom, and drag it down the hall, through the kitchen, and into the laundry room.  I try to never let him get this far, because he is past the point of no return in his mind, and a major meltdown will ensue when I stop him from putting them in the dryer.  Most days I catch him when he starts pulling out clean clothes, and immediately try to redirect him to doing actual laundry.  With there being three of us, and me working out at least once a day, and often twice a day, there is usually laundry to do.  So I have to redirect him to the actual laundry.  It’s not like he just gives up on his clean laundry, because I tell him there is actual laundry to do, it is much easier to just grab some clothes that is all folded up, and toss them in the basket, than to go round up the laundry.  In the end he usually accepts this, and we start in one room, and go room to room emptying all the baskets into one.  As I said, we are three guys, there is no separate loads in our house, laundry is laundry. So what if my socks have a slightly blue tint to them from being washed with jeans, chances are they are also being washed with legos, sand box sand, rocks, and whatever else the boys have left in their pockets.  I try to drag this out as long as possible, with the hope that he gets distracted along the way.  Once we get to the laundry room, I put the clothes in the washer, pour out detergent, and let Holden dump it into the machine, and push start.  At this point he tries to go back to the bedroom, and start grabbing clean clothes again, cause he knows there is still nothing in the dryer.  

Needless to say, this increases our water bill, electric bill, and is somewhat wasteful, being that they are not always completely full loads.  This is just one of the many ways that having an autistic child can increase your expenses.  He also likes to change out the trash and recycling bags before they are full, hell usually before they are even half full.  No one will ever accuse Holden of being unclean, or lazy, that is for sure.  As a friend of mine put it the other day, he is quite industrious.

"I'm So Sick"

Something that has always plagued Holden is that he gets sick a lot.  I don’t want to jinx this, but ever since we have been in Santa Barbara, he has been sick less.  However, either way, he tends to catch more than his fair share of colds.  I believe one of the reasons is that Holden still sticks things in his mouth, including his fingers.  It is one of those things that most kids grow out of, but for some reason Holden’s disability has made him cling to this for longer than most kids.  The logical answer is probably sensory.  Our mouths are incredibly sensitive to a lot of sensory information.  In fact as I write this, Holden is fighting a cold, nothing serious, just the sniffles, but a cold none the less.  There is nothing particularly interesting about this fact, except for one thing.

Zane has managed to have another perfect year in terms of attendance.  This is the second time in a row that Zane has managed this feat, something that his teachers haven’t even accomplished.  This achievement in itself is quite a great one, but couple it with the fact that his brother is a walking cesspool of germs, it makes the achievement all the greater.  I would love to attribute his great immune system to the fact that he was breast fed, and breastfed for longer than most kids are these days, however so was Holden.  I have to take a second and say that I think that breastfeeding is a natural and beautiful act between a mother and her child, and that there is no place that this necessary act is inappropriate.  It truly amazes me that people get so bent out of shape over such a natural act.  What’s next, having to clothe our pets in public?  Okay, I digress.

I should state for the record that Zane indeed does get sick.  He does not have any super power, like being unbreakable or anything.  He just doesn’t get sick often, and usually doesn’t get very sick.  Once again, I hope I am not jinxing myself in stating this.  To his credit, Holden tends to power through most common colds too, but he does have a tendency to get some nasty bugs as well.  In fact about the only time Holden is still, is when he is sick.  It makes it all the more obvious that he is not feeling well.  I have watched him sleep for 18 hours in a day, only waking to be sick before.  

Ironically, Zane was the one who required surgery for Pyloric Stenosis at the age of 6 weeks.  I can tell you, having a baby have to have surgery, is about the worst experience a parent can have.  Having your first baby have to have a surgery, really tests new parents.  It was a horrible experience that probably deserves a whole blog dedicated to it, but suffice to say, I don’t recommend it to anyone.  Ever since he came home from the hospital from that surgery though, Zane has been one healthy kid.  I believe in rewarding achievements like that, and I have rewarded Zane both times he accomplished his perfect attendance.  He usually does pretty good with his grades too, so the end of the school year has typically been hard on the pocketbook, but well worth it.  Now if I can get him to clean his room, and not talk back, I could retire as a successful parent. . . I guess I won’t be retiring anytime soon.  

"On The Road Again"

For the first time in over two years I am touring.  It is just a short tour, 5 shows over the Memorial Day weekend.  Still it is very significant.  A year ago I didn't think this would ever be possible again.  It took a few things to have transpired for it to be possible for me.  The biggest one, is Zane and Holden’s mother moving back to California, and especially Santa Barbara.  It would not have been possible for me to tour had she still lived out of state.  Of course, having Toad still want me to tour with them was certainly a necessity.  As I have stated on this blog before working for Toad was the best job I ever had, not because of the bright lights and big cities, but because I was appreciated, respected, and given a lot of freedom to be creative in my work.  That means a lot to me, and most employees.

So as I was working my first show on the trip, it dawned on me that this job had help prepare me for being Holden’s father.  There are a lot of stressful jobs in the world, a wall street broker, Bering Sea crab fishing, and many others.  There are few jobs though, that require you to work in front of an audience.  Back in the nineties it wasn’t unusual for us to do shows for over 20,000 people.  When you headline a show for 20,000 people, and you have to do the changeover, after the opening band plays, you are working in front of 20,000 people.  They are actively watching you, because they know that when you are done, they get to see what they paid good money to see, which was not me setting up gear.  When something would fail on stage the whole show would come to a stop, while I tried to figure out what went wrong, and how best to fix it.  To add to the stress, the person who’s gear failed is equally stressed because their gear isn’t working, and they are holding up the show.  One would think that it’s the ability to not care what people think of you, that would make working such a job tolerable, but in actuality, for me it was being able to focus on the job completely.  To become so immersed in what I was doing, that I didn’t even take in the fact that I was working in front of people.

As a parent, we have to be that focused on our children.  As the parent of an autistic child, we have to be even more focused.  It’s not that we learn to negate all the background “noise”, but rather that we bring our focus up on the foreground so much, that the rest becomes so background, it all but disappears.  As a parent of a special needs child, we cannot allow our attention to drift at all.  The stakes are just too high.

I don’t know if I am just naturally the type of person that can focus in on one thing, while still being aware of my surroundings, or if working as a roadie, developed those skills for me, but either way, it helped prepare me for what I never knew was coming.  Now looking back on all that I have done in life, not much else could have better prepared me for the journey I would take in life, when Holden was born.  So having the opportunity to do this job again, has really helped show me the light.  I can now add that it taught me to be a better parent, to remain calm in bad situations, and to learn to deal with the situation at hand as best, and as efficiently as possible.  To adapt to the ever changing stages, lights, temperatures, and cities that go along with tour, just like I need to adapt to the ever changing entity that is Holden.

Last but not least, two things have become very apparent to me on this tour: 1) I am not as young as I used to be.  I was discussing this with one of the other crew guys, and as he so wisely pointed out, it’s the recovery time that gets elongated by age. 2) I miss my boys SOOOOOOO much!