"Strong Enough"

It has been a while since I had time to put fingers to keys, and I have to apologize for that.  The issues that arose from moving were so much more taxing, and emotionally draining on us all, then I ever could have predicted.  As is usually the case, Holden suffered the worse, and said the least about it.  To give you an example of how much Holden’s routines mean to him, last night Holden decided he wanted to take a bath before bed.  He asked with plenty of time, so I was happy to run a bath for him, bubbles and all.  Prior to going into his bath, he took off his clothes and went to the bathroom.  After soaking, splashing, and playing with the bubbles, he flipped the switch to drain the water, his sign to me that he is done, and got out of his bath.  I dried him and got him ready for bed.  He began his routine of “Go potty and brush your teeth” as he says.  Every night he goes potty, then brushes his teeth.  Well having just gone to the bathroom prior to taking his bath, he found he didn’t have to go.  Now if this were any of us, we would probably not even think twice about moving on to brushing our teeth and going to bed, not Holden.  He began to get very upset and continue to try to go to the bathroom.  He tried to implore me to help him go to the bathroom, something that to my knowledge, is impossible.  So, I did the only thing I could do, I comforted him, held his hand and rubbed his back, until around ten minutes later he managed to squeeze out a few drops of urine, and happily moved on to brushing his teeth (after washing his hands of course).  These routines are so important to Holden, and he has such attention to detail, that he notices everything that changes.  The first night we were in the new house, we used the hall bathroom to get ready for bed, because I had only unpacked one bathroom, now he has to get ready for bed in that bathroom, even though he sleeps in the master bedroom that has it’s own bathroom.  So you can imagine how hard moving was on him, well guess what, it was worse then I thought. . .

It soon became very apparent that I would only be able to pack while Holden was in school, this immediately cut down the days I had to pack.  When I tried to pack with Holden around, he would try to put back everything I packed.  As I stated in my last blog, he would even try to unpack the boxes I had already packed.  Well, even with my packing while he was at school, and trying to make the situation as easy on him as I could, the affects soon became physical.  He began to pick at his face from the anxiety, and eventually picked his face raw in several places.  I can not even begin to tell you how heart breaking it is to see your child’s face bloody and scabbed from something, you know in the end will do him so much good.  However, all the good to come, didn’t help through the present suffering for Holden, and eventually myself.  It became so difficult, and time was running out for my deadline to move, that I had to start paying my nanny for extra days to pack.  I was trying to do things with no money, no time, and time running out, while Holden was becoming more and more upset by the whole experience.  Zane also began to have his own issues about moving.  He began to realize that he would be leaving his friends behind, and going to the unknown.  He was also becoming especially moody and upset.  The over all atmosphere was one of discomfort and anxiety.  The absolute low point came, after we had finally gotten here, began to get moved in, and we had to make a return trip to Escondido to further clean and take stuff to the dump.  Holden was barely beginning to adjust, he was asking to go back to “Daddy’s house” which I had to explain was where we now were.  We had only spent two nights in our new home, and we were going to have to go back.  This was so incredibly hard to do.  I knew it would further confuse Holden, plus we would have to drive from Santa Barbara to Escondido and back to Santa Barbara in one day.  I dreaded the trip and the affect on Holden so much, but we had no choice, for one thing my truck was still in Escondido.  The one bright spot of this was my dad took us back to Escondido, and Holden absolutely loves his grandfather.  He was so happy to be in the car with Grampa, and to make a few stops with his Grampa along the way.  That ended as soon as we got to Escondido, and Grampa had to go.  Once again I had my Nanny watching the boys while I worked, and in truth, I needed another day to get everything I needed to get done done, but I couldn’t do that to Holden.  I had to get us back to Santa Barbara, and try to start moving forward with life.  I regret that I had to leave things the way I did, but I had already caused Holden so much damage, and his poor face was to raw and scabbed, that I had to make that call.

I am happy to say we are all adjusting well.  I probably did the weirdest move in of all time, because I focused on absolute essentials first, then started hanging pictures and prints.  I did that because a) those pictures and prints were familiar to Holden, and b) he would notice as soon as I put them up, so rather then cause more and more change everyday, I tried to get that stuff up first, then unpacked the many boxes of stuff as I needed them.  He was less likely to realize when I unpacked the silverware, then putting up a print of Jimmie Hendrix.  I am also happy to say that Holden is almost completely healed up.  There were a few places he continued to pick at for a while, one spot in particular that is almost completely healed, and I think there will be little to no scaring.  

I am also happy to say that my gut was right.  So far everything has been so much better for the boys.  Zane loves his new school and has made friends quickly.  Holden is doing well in his knew school, and was especially happy when he got to start taking the bus again.  The schools are so much easier to work with, and are ready to assist and provide the services that the boys, especially Holden require.  The Regional Center seems to be very willing to help, and also provide services to Holden.  Things are settling in well, and the boys are liking their new environment.  Holden still asks for Escondido and San Diego, but he also has begun talking about Santa Barbara a lot, and has fallen into a routine he seems to really like.  Things are working out well, but I can’t tell you how much I questioned my choices along the way.  I couldn’t help but think I had put Holden through hell for the wrong reasons.  There is also no doubt that Holden went through some of his darkest days in his young life.  He was brought home from the hospital into the house in Escondido, and it was primarily the only home he had ever really known.  

There are a few more hurtles for us to get past, like a job for me, but the future looks bright!

A Change Would Do You Good

There has been much written on the subject of change.  For the most part there is a general consensus that change is good, though not always easy.  I think for the most part we are creatures of habit, very easily getting stuck in a rut.  Something I have always found interesting, is that I drive the same way to work everyday, and the same way home everyday, but I use a different route for going to work, then I use for coming home from work.  There is no doubt that the coolest job I ever had, was working for Toad The Wet Sprocket as a roadie, specifically being Todd’s roadie.  He was always so open to trying new things, and even if we didn’t stick with it, he always gave it a real try.  I was always so grateful for the opportunity to be creative in my job, and have the ability to affect change.

Holden’s OCD tendencies make it difficult for him to deal with change.  The more I can prepare him for things, the better they go, but even when prepared, it can affect him badly.  We are going through a major change right now.  We are relocating to my home town, and I have been spending the last month packing things.  We have been in our home for 10 years, so there is a lot of accumulated, well frankly, crap.  So, between packing, and throwing things away, the house is a different place almost everyday.  Holden is so aware of details, and notices everything.  Everyday, he comes home, and has to deal with more things in his environment changed.  All in all, he has been doing such a great job with it all, but the other day he had a pretty major melt down.  I have been anticipating this for a while.  To give an example of how attentive he is, and what it can lead to, we once made this crayola putty painting, and after time the frame broke.  I didn’t think much of it and threw it away, but Holden totally noticed it missing, and tried to dig it our of the trash and put it back on the wall.  After it fell, the hardened putty broke out in several places, so he wanted to tape the putty back in place, then tape it to the wall.  It was a bit of a battle to get him to accept that it was not going back on the wall.  So you can imagine how it is for him to come home and find all the guitars no longer hanging from the wall, all the prints gone form the walls, books and book shelves gone, counters empty, and boxes everywhere.  The other day he decided he wanted to pack his own box of things, and I highly encouraged this.  Until he decided to unpack his box, then got the idea to unpack my boxes too.  

I have been trying to prepare him for this move for quite a while.  Every opportunity I get I tell him about it, where we are going, and when.  I am not really sure how much he understands though.  Every time we have visited in the past, he has always enjoyed it.  There is so much more of the things we all enjoy doing there, and with time he will love it.  It’s just the process of getting there, and all the change that is going on, that I am sure is driving him crazy.  So when he melted down a few days ago, I was especially patient with him.  When he has a melt down, I am always very firm with him, that he is still not going to get what he wants, so there is no point in his melting down.  I tend to be especially strict when he screams, and tell him that screaming will get him nothing.  However on this occasion I didn’t really try to stop him, or redirect him, I let him go off for a little bit.  I was very calm, and spoke very softly to him.  Zane was a little put off by this, cause he knows that my zero tolerance method usually works very well, and asked me why I was staying so calm through such a bad melt down.  I explained to him, that his brother was reacting to all the changes going on around him, and that this was the culmination of many days of frustration, finally being expressed.  Zane, ever the compassionate big brother simple said, “Well that’s stupid.”  After his melt down, which was because he couldn’t get all the straps of a back pack to buckle around him, was over, he came over and wanted me to hold him for a bit.  I love every second I get to hold him, and was happy to oblige, then I got out a different back pack that does buckle in two places and he was all smiles again.  I probably could have redirected him to this back pack right away, but I really felt like he needed that release.  Holden can’t talk about his feelings, he can’t write in a journal, he can’t play the guitar, so sometimes he needs a way to get out that pent up anxiety from the things in his life.  Certainly dealing with an ever changing environment will cause him some pent up anxiety.  So I indulged in his melt down, and by not redirecting it, kind of encouraged it.  If it was Zane that was being bothered by the move, I would ask him what it was that was bugging him, and get him to talk about it.  Get him to express his feelings about the situation, and help him come to terms with it.  At this point, that is virtually impossible with Holden.

Change is good, and this change feels so very right to me.  I am confident this is the right choice for so many reasons, and the boys and I will benefit from it in so many ways.  That doesn’t mean there may not be some bad days along the way.  There is nothing fun about moving, packing, or cleaning, but the end justifies the means.  When this is all over, and we are all settled in our new environment, I may allow myself a major melt down, but I will probably just splurge and buy a pizza instead.

Magnum Opus

An interesting thing has transpired in my life.  As things seemingly got worse and worse in my life, I have became more and more positive.  The thing is, I never really realized it, other people have pointed it out to me.  The past ten years have not been perfect, by any means.  My son was diagnosed with Autism and A.D.H.D., my wife left me, my mom who has Parkinson's, had to fight ovarian cancer, my job that is entirely commission based had already suffered a 30% drop in numbers due to the economy, then cut my pay a further 20%,  and I had to quit touring.  Here is the irony, I think any one or two of these things would have probably sent me into such a deep depression, that I may never have come out of it, however, having them all happen, has left me with a sense that I can survive almost anything.  That I was able to put aside my own wants and needs even further then I already had, and do what is best for my kids, has made me a truly happy person.  That is not to say that there are not days that I get down about things.  Especially when it comes to Zane, and not being able to give him the life I want to.  Then he says “I love you dad” and he doesn’t just say it once a week, or once a day, he says it all the time, every day.  Then there is Holden, who seeks comfort in me when he is upset, when he is sick, when he is hurt.  To hear him say “Daddy. . .” followed by anything, is more heart warming then anything I can think of.  Being able to take care of these two boys, especially Holden, has made me more patient, strong emotionally, and much more mature.  They have helped me find a balance in life, and not spend all my time worrying about what I don’t have.  This wasn’t something I understood, it was people who knew me, and knew what I was going through, and yet saw me smiling, and laughing, that told me things had changed.  They were right, I never smiled and laughed.  I am still a dark person, but not like I had been my whole life, now I am dark, because I love the beauty in dark things.  Mozart’s Requiem Mass is a dark piece of music, but it is also absolutely beautiful.  Samuel Barber’s Adagio for strings is also very dark, but every single time I hear it, it brings tears to my eyes with it’s sad beauty.  Bands like Alice in Chains, Nirvana, Death Cab For Cutie, and Radiohead have very dark music too, but it is also all so very beautiful.

The thing is, without embracing the dark, how can we really understand the light.  Without diving into the depths of our darkest corners of our soul, how can we appreciate the golden bright parts of it.  I am happy now, not because I sought happiness, I am happy now, because I faced my darkest hour, and resolved myself to accept it, and allow myself to see the light that still shined even in that darkest of hours.  Just like Mozart’s Requiem, that takes us to our darkest hour, but shows us how beautiful, yes sad, but still beautiful that even death can be.  It is so that our lives are one big Requiem, our life long Mass for the dead, that can be sad, and dark, and beautiful, and full of light and life.  I want to spend the rest of my days listening to Holden’s Requiem, and Zane’s Requiem, and those of my dear friends that are so important to my life.  I want to hear the beautiful, dark, sad, and uplifting music that emanates from all of them.  My three friends in the Bay Area, you know who you are! My two friends here in San Diego county, and even one in the desert, who probably doesn’t believe I am speaking of her.  This is the music that moves my soul, each so different from each other, yet each so beautiful in it’s own way.  

To me, Holden and Zane are my Magnus Opus, they are the music that has taught me how to be happy, perhaps for the first time in my life.  They are the music that has shown me the light, and after so many years of being in the dark, I can fully appreciate the beauty from their light.  They are the ones that bring a smile to my face, that everyone else has begun to take note of.  They are the ones that have laughter dancing on my lips, for no particular reason.  They are the ones that shine so bright, that even on the darkest days, I can see their light radiating.  Yes the last ten years have not been perfect, but they have made me realize something I always knew about people, but didn’t know it applied to life as well.  I have always known, and appreciated that it is our imperfections that make us unique and beautiful, but now I know that it is life’s imperfections that make life beautiful.  That a perfect life, like a perfect person, doesn’t exist, and lacks depth and beauty.  So to all of those who see me smile and laugh, and don’t understand how I can feel that way, as I live through all these “tough times”, don’t know a secret I know, my imperfect life is beautiful, BECAUSE it is imperfect.  That Holden and Zane are beautiful, because they are imperfect.  That the music I hear in them, and my close friends, is so beautiful, because it is imperfect.  Most of all, I appreciate the dark,  just as much as I do the light, because true happiness comes from the balance of accepting that there is no light, without darkness!

The past is history, the futures a mystery, and today is a gift, that's why we call it the present!

Survival of the fittest has long been a misunderstood element of Darwin’s theory of Natural Selection.  For a lot of people, survival of the fittest brings up visions of a bunch of super model looking women, and jock type guys, on treadmills in the local gym.  In reality what Darwin’s theory was stating, was that those that best fit in their environment, would be the ones to thrive and prosper.  Keeping in mind that that environment could shift at anytime, leading to a change in the natural selection.  The Peppered Moth being the quintessential example of this http://en.wikipedia.org/wiki/Peppered_moth_evolution.  However, in the world of humanity, social Darwinism has, if not replaced, certainly changed the evolution of the human race.  This time the image of all the people on the treadmills is accurate.  Beauty is determined by the media, that uses make-up, touch-ups, and other tricks to create a beauty that doesn’t even naturally exist.  Add in “corrective” and plastic surgery, and you get an imagine of beauty that is completely manufactured.  I could discuss at great length, what I think of this new evolution of the human race, to homosapien synthetic, but that would be a greater tangent then I intended for this blog.  At this point, it is the concept of social Darwinism that I want my faithful readers to have in the forefront of their minds.

One of the most difficult aspects of parenting a child on the spectrum, is trying to be objective, especially when dealing with the school.  Going over Holden’s triennial assessments in a room full of specialists, and hearing them refer to Holden’s sever communication deficits, his impairing handicap of A.D.H.D. and his need for a behaviour plan, it is hard not to yell out that he is absolutely perfect just the way he is.  That would be counter productive, as my job as a parent and advocate for Holden, is to get him the services he needs to help him improve.  So we have to swallow back our parental pride in our wonderful children, that are truly perfect, and express those same deficits, and handicapping behaviours.  It’s even worse when we go back and read the very straight forward minutes from such meeting, where we read things like: Father expresses observation of same deficits and behaviours at home.  As I am reading the report, I can’t help but think what a jerk that father is.  At the same time, I know that father, me, is trying to put aside his monumental love for a child that is absolutely beautiful, intelligent and perfect just the way he is, for the sake of helping him fit into a society that doesn’t happen to fit him.  

In many ways, as I have previously expressed, Holden’s disability has made him more human, than many of his un-handicapped fellow human beings.  I find it hard to want to be a part of a  society that finds humour in the pain and suffering of others, as exemplified in the popularity of the “Jackass” series of movies.  As a society we find the subject of “Roasting” Charlie Sheen, to be worthy of discussion for several days, mean while our schools are working with budgets so stretched, that a fly landing on it would snap it, yet that has become the status quo.  We are a society that promotes escapism through happy hour drink specials, reality TV,  and a $.99 menu.  Like the ancient Roman times, we are all under the trance of bread and circus, while our society spins off axis into a different realm.  I could go on, and on, and on, but I think we all get the picture.

So now I am trying to help give Holden the tools to “fit” into this society, that he so unfortunately does not fit in, and a part of me thinks I am doing him a great injustice.  Of course we all have to function within the parameters of the society we live in.  If we are some of the lucky few, we find a niche that we fit in really well, and can be ourselves with those around us.  The difference though, between Holden and Zane, is that I can express to Zane that he needs to decide whether he wants to live in the society as a member of it, participating in it’s ever flowing insanity, or live on the fringe of it, as an outsider that works within the system.  Where as with Holden, I am actively trying to help him fit into the very society that I prefer to live on the fringes of.  I would never tell Zane what to do with his life, but if he asked me, I would certainly promote living on the fringe.  Yet here I am, trying to help Holden fit into his society.  In reality, Holden may have no choice but to live on the fringe, and work within the norms of a society that he doesn’t completely understand.  In fact that is what we are really working towards for him, and anything that happens beyond that is icing on the cake.  

Perhaps someday social Darwinism will make a big shift again, and like the Peppered Moth, it will go from one extreme to another, and back again.  Perhaps as we push for a cleaner planet through conservation, we can work on a little moral conservation as well.  Find beauty in the attributes of a person, beyond physical beauty, but in integrity, intelligence, empathy, and compassion.  perhaps our moral conservation can teach the importance of emotional intelligence and maturity, while living in reality, and in the present.  In that society, Holden already fits much better.

(I have to explain the bottom picture.  Zane loves to read under a desk, in his little dark corner.  It scares me how much he reminds me of myself.)

The Future's so Bright, I Gotta Wear Shades.

One of the things that people ask me a lot, is where do you see Holden in 10 years, 15 years, 20 years.  I honestly can’t even see where I will be in 10, 15, 20 years, assuming I am still around.  Both of the boys are very attached to me.  For Holden I am the consistency that he craves so much, and finds comfort in.  For Zane I am his foundation that grounds him, the person that will always love him, and always put his needs before my  own.  In a way it amounts to the same thing, but Zane is much more keenly aware of everything that goes on around him socially then Holden is.  He has a much more profound grasp of money, responsibility, consequences, and the way things work, then Holden does.  It is my assumption, like all maturing kids, they will become less attached to me over time.  I’m not going to put an emotional value on that in terms of myself, but in terms of them I think this is a big and important step.  Lets face it I won’t be here forever.  So where do I see them . . .  

In some respects Holden has progressed so well.  From the moment we got him in a special preschool two years ago, to today, he has made such great progress.  That’s not to say that it hasn’t been very frustrating at times as well.  As I stated in the post about Holden’s milestone of not wetting the bed, it came with a new issue to overcome (which I am happy to report is going quite well).  So as behaviours have gone away, new ones have appeared.  Progress in life has always come at a cost. Certainly we could have long political, religious and philosophical discussions on that topic.  We all know the pain of innocents lost in our own lives.  The first time we experience heart break, loss of life, and failures are all very traumatic times in our lives.  All the social games we have to start playing from the moment we enter school to either fit in, or be an outcast.  The constant battle to break down stereo types that begin almost at birth.  Holden’s  diagnosis itself came with a price tag, that price was a label.  There is no question that more damage would have occurred had we tried to mainstream him, but it was certainly a choice we made for him, that will have repercussions for life.  That is something I take very seriously.  Zane’s doctor tried to label Zane as ADD or perhaps ADHD.  I seriously questioned that at the time, and felt it was to early to tell.  There is no question that Zane is NOT either of those things now.  Sometimes I feel with each new service we get for Holden, we are further cementing his status as developmentally disable, but at the same time these services are what may help him be mainstreamed in the future.  Now I find myself back where I started, the future.

I think I have committed journalistic suicide with this topic.  Maybe I should come up with a new name, like “blogger’s euthanasia”.  The truth is, it seems to depend on the day.  There are days where I can totally see Holden in high school classes, keeping up perfectly fine, and maybe having a special aid that helps him with certain ideas that are hard for him to understand, outside the class.  Then there are days where I can’t imagine him ever getting out of a special day classes.  These days are very hard to deal with.  I feel guilty for feeling that way, and I feel sad that I might be right.  We all want what is best for our children, and none of us can guarantee anything.  With Holden there are just so many more variables to consider.  Even Zane, who is progressing so well, and doing so well, you just don’t know.  I see him in five years, enjoying life, doing great, thinking about what colleges he wants to attend after high school. Probably somewhere as far away from his father as he can pull off.  The truth is, nobody knows anything for sure.

If I were to use a model based off my own childhood, and Zane’s early elementary school development, I would say Holden is entering the time in his life where there are going to be leaps and bounds in his development.  Nobody would have guessed that the Jonas that stated kindergarten in 1975 at Fairview School in Goleta, would become the Jonas that attended Jr. High at Goleta Valley Jr. High, or the Jonas that graduated from Dos Pueblos High school.  Certainly not the Jonas that graduated from San Francisco State University.  I think there are parents of kids who were in Zane’s Preschool class that were sure he was a future ax murderer, now he is a G.A.T.E. student in 5th grade.  I don’t know where Holden will be in 5, 10, 15 years, but I wouldn’t be the least bit surprised if he has developed beyond any of our expectations.  I am going to be as realistic as I can every single day, and do what has to be done to help him along as best I can, but I hope he completely exceeds everyone’s expectations!

"Help! I need somebody"

There is a great website dedicated to helping support families that are touched by autism spectrum disorders, called Autism Support Network http://www.autismsupportnetwork.com/ .  They have daily Facebook posts that are inspiring and informative.  The other day I was reading one of their post about asking for help, as a parent, and especially a single parent of a child on the spectrum.  I have decided for this post, to adapt the style of Bertolt Brecht.  Brecht’s main contribution to literature was in the form of plays.  In his plays, he wanted the audience to realize that the play was a representation of reality, and not reality itself.  One of the many ways he did this, was to tell you what was going to happen, before it occurred, or in lay mans terms give away the ending.  His idea was to eliminate the anticipation, so that the subject matter could be better digested from a moral stand point and “rational self-reflection and a critical view of the action on the stage”.  So the play became the equivalent of one of Aesop’s famed fables.  Now a days movies do it all the time, we have some sort of climatic event, then we see something like 36 hours earlier, and the rest of the movie is catching up to the beginning of it, there by eliminating the anticipation of the end of the film.  Brecht would also often have the characters talk to the audience directly, breaking the “fourth wall”, again fairly common today in movies like “Farris Bueller’s day off” and “Zombieland”.  

I was affected by this post in two ways.  My first reaction was to do a little self evaluation, and realize that I have a lot of trouble asking for help.  My second reaction was to read all the comments in this post, where everyone seemed to feel as I did about asking for help, and when they finally did ask for help, they didn’t receive any.  It has always been difficult for me to ask for help, and in fact even when help is offered, it is still difficult for me to accept it.  There is some irony in this, because I am the type of person to offer help, and give it freely.  In fact my willingness to help people out has cost me dearly in the past.  I once loaned a car to a friend and former drummer of mine who was down on his luck, and had his truck repossessed.  He then proceeded to get a DUI in the car I had loaned him, landing my car in impound, and I don’t even want to think what would have happened if he had been in an accident.  On another occasion I loaned a guy my semi-rare WWII Jeep trailer to haul some stuff to the dump, and he ended up skipping town with my trailer, never to be seen again.  

I would freely admit that it was my pride that made it so difficult for me to ask for help, however, I am not certain that is the case.  There is no question that I have some social issues, and this would certainly fall into that category too.  There is an interesting “catch 22” that occurs as well, in the rejection of help.  When we finally realize we have reached a point where we need help, and we swallow our pride, and ask for it, if we receive rejection, it makes it that much harder to ask again.  In all fairness any financial requests in our current economic “climate” are really not fair requests to make, nobody has extra money right now, at least no everyday citizen.  I would never even ask for financial help from anyone, even if the economy was booming. I would sooner sell some possession of mine that I thought was important once upon a time, but now realize is really not, in light of the life I now lead.  It’s sometimes even just the little things, that can mean so much. That is the kind of help I appreciate.  I have honestly received some incredible help from so places I never looked, and I am so grateful to those people who have helped me.

The cool thing is, sometimes help comes to us in the rejection of help.  For me, it has made me acutely  aware that the help I seek, needs to come from myself.  It’s not in the asking for help from others, it’s in the willingness to do what I know needs to be done.  It’s knowing that I can only count on myself.  Like the old saying goes, “If you want something done right, DO IT YOURSELF.”  They say that the definition of insanity is doing the same thing over and over again, and expecting a different out come.  May be I am insane, because I know this life rule, it should be tattooed across my damn forehead.  Time and time again it has surfaced, and I stare at it, and think “Oh yeah, I remember now.”  

So in reflecting upon that post, and all the negative response to it, it dawned on me, I do need to swallow my pride and ask for help!  The person I need to ask though is me!  I know there is only one person I can truly count on to do everything in their power to make things better for myself, and that person is me.  So I am swallowing my pride, and confessing in front of the whole wide world (web), self, I need your help!  I need your help learning how to take better care of myself.  I need your help finding the patients necessary to raise two kids by myself.  I need your help making the best choices financially for myself and my kids.  I need your help finding my voice to stand up for Holden, and get him the help he needs, to become the most he can be.  I need your help making sure I keep Zane honest to himself, and that he finds his place in the world.  Most of all, I need your help to have the strength to believe in myself, and remember that if I want it done right, I have to do it myself!

Let's do the time warp again!

It’s September 14th 1996.  I have just flown into the Minneapolis St. Paul area of Minnesota the night before.  I am single,  attending California Institute for the Arts MFA acting program in Valencia Ca.  I have flown out to work a show for my friends in Toad The Wet Sprocket.  Unbeknownst to me in less then three months these same friends will offer me a full time touring gig, and I will drop out of Grad school to go tour North America with them as a roadie and extra musician, playing on national television, national radio shows like “Modern Rock Live” and “Rock Line” and perform for thousands of people live every night.  Today, September 14th 1996, is my birthday (for all those who bug me about when my B-Day is, here is your chance), and we are playing an outdoor Ben and Jerry’s festival.  The crowd is 20,000 strong and we are the headliner for the festival.  Just prior to our taking the stage, Ben and Jerry themselves show up and talk with us.  One of the members of the band tells them it’s my birthday, so they hand me a few gift certificates for free pints of ice cream (The first time I used one was a week later in Valencia, my roommate and I go to the scoop shop and I present the card to the girl working.  She proceeds to flip out, because she realizes that the gift certificate is signed by the actual Ben and Jerry, it was pretty fun to watch!).  During the show I am doing my usual thing, tuning guitars and handing off guitars in between songs, playing guitar and organ on the few songs I play on.  Sometime towards the end of our set, I go to hand Glen his acoustic guitar, and take his electric from him, when he reaches out and grabs my collar before I can walk off stage.  He tells the audience that today is my birthday, that I have been a friend of the band for years, working one off’s for them.  Dean tells them I am attending Cal Arts, and as it is his favorite part of the school, explains how it is a clothing optional campus.  Out of nowhere someone in the crowd starts singing happy birthday, soon the whole crowd has joined in.  I can tell you right now, having 20,000 people sing you happy birthday is quite an experience.  Over all the show was awesome.  After the show was over, I started tearing down gear, as the audience started filing out.  As they walked past the stage people continued to wish me happy birthday.  After the show the band took me out to dinner at one of those Japanese restaurants where they cook the food right at your both.  It’s probably a no brain-er to say that this was my best birthday ever.  So why am I writing about this in this blog?

In reflecting about my life, all the places I have been, all the things I had the privileged of being apart of.  All the places I got to see, 42 states, throughout Canada, and eventually Europe.  Having fans envy me for my job, envy me for getting to play with the band, and envying me for being close to something that was untouchable to them.  What I now know is that I never learned how to get out of the way of myself and enjoy any of it.  I have incredible memories, like the one I just told.  Those will be mine so long as I have a memory, but I was still depressed a lot back then.  The thing that has taught me how to get out of the way of myself, and how to truly enjoy life, is Holden.  I can watch Holden sleep for hours, and get such joy out of it.  The same applied to Zane, but only after Holden taught me how to get over myself.  I can remember being embarrassed by Zane when he would draw attention to me in a public area.  I would get upset with him, for being so social, never to him, but in my head I was made uncomfortable.  I have had some phenomenal compliments about my own performances, in both music and acting, but I was always to embarrassed to receive them properly.  So much of my life was spent feeling unworthy of a lot of things.  Holden doesn’t have any of that crap, that baggage we all carry with us.  The baggage that either cripples us socially, or makes us over compensate.  I watch Zane yearn for attention, and bask in it when he receives it, and thirst for more.  It worries me.  Holden has no need for that.  He loves unconditionally, and feels no shame, embarrassment, envy, greed, or gluttony.  He enjoys the moment with no concern for the past or future.  How long have I spent meditating, reading, self evaluating to  try and achieve a fraction of that?

I am nowhere near Holden’s level of Zen, his ability to exist in the now.  However, for the first time in my life, I am realizing that to achieve that kind of enlightenment requires one to step the hell out of their own way.  Holden is free, not because no one else is stand in front of him, he is free because he is not holding himself back.  My life changed forever the day Zane was born, my very core changed for the better, now it is my very soul that is changing.  I wish I could go back to September 14th 1996, and grab that freshly turned 26 year old by the back of the neck, and tell him how stupid he is for not living in the moment.  To tell him that his life is so rich right now, and so full of adventures that are just waiting to be had.  That he has to grab life by the horns and live it like there is no tomorrow.  Because too soon tomorrow might be a day when you find out your beautiful baby boy is autistic.  

It’s very ironic to me, that my life is happier and richer now, then it was when I was living the rock and roll life style, and it is because of the profound wisdom of a six year old, who has no idea that he is enlightened.  I hope his big brother can learn the same lessons from him , that I have.  I know that Zane has a different outlook on a lot of things then most kids his age, and I think some of that is Holden’s doing.  I can’t go back in time, but I can make myself a life long student of Zen Master Holden, and I can’t think of a better pursuit in life!

You put your right foot in . . .

Holden used to have some real issues with sleep.  As I stated in a previous post, Melatonin has really helped him get to sleep.  Even when he did have trouble sleeping, it was only in getting to sleep, once asleep he typically slept through the night.  For the most part, Holden has never really had much of an issue wetting his bed.  He occasionally wet his bed, and really I didn’t consider it a huge deal, because it was so infrequent.  Recently things have changed, and Holden now wakes up when he has to go to the bathroom.  One would think this was a great milestone to reach in a child’s development.  Certainly in terms of Zane it was indeed, especially since Zane seems to have inherited his fathers small bladder.  However, as always is the case of Holden, it brought up a new issue to have to deal with.  On the occasions that Holden did wet his bed, he would sometimes sleep right through it, and other times he would wake up and be upset, I would get him cleaned up and changed, change the bedding, and he would go right back to sleep.  So when he woke up for the first time and said “bathroom” I was happy and said, okay go.  He got up, went to the bathroom, and seemed himself to be happy about the situation.  Then, instead of heading back to the bed room, he goes bounding into the play area.  At which point my first thought was “Uh oh!”  So I expressed to Holden that it was 12:30 at night and he needed to go back to sleep.  He accepted going back to bed no problem, but ended up staying up for 3 more hours.  Luckily he didn’t have school the next day, unluckily for me I had work.  About a week later, it happened again. He woke up, expressed his need to use the bathroom, I encouraged him to do so, and he did.  This time he came straight back to bed, but again, did not go back to sleep.  Both times he did this, I was trying to explain to him that he needed to go back to sleep.  As is usually the case with Holden, he thinks it’s quite amusing when you try to explain something serious to him.  So once again it was several hours before he went back to sleep.  Luckily this time it was Saturday night into Sunday morning, and neither of us had to be up early the next day.  Then a few weeks later, the now dreaded words woke me from my slumber “bathroom”.  So I tell him to go to the bathroom, and try to get him back in bed as quickly as possible, because this time I have to work, AND he has to go to school in the morning.  Once again he seems wide awake, and like the old days, unwilling to settle down and sleep.  So for the next few hours I continue to tell him he needs to go back to sleep, or he will be very tired at school.  He finally goes to sleep around 4am.  

I wake him up a little later then normal for school, but the bus comes at 6:30am so I don’t have a lot of choice.  He is very upset when I wake him. He doesn’t want to leave his bed, doesn’t want to get in the shower, doesn’t want to get out of the shower, doesn’t want to get dressed, doesn’t want to get on the bus.  This was the worst part for me, because he grabbed me in a bear hug, and did not want to let go.  The bus driver and I strap him in, he is crying by this point, and she assures me, he will be asleep in a few minutes time.  I, on the other hand, am not so sure.  The whole time I was getting him ready for school, I was telling him that he feels the way he feels, because he didn’t get enough sleep, and that it is important to go back to sleep when I tell him too.  I’m not lecturing the poor kid,  just trying to let him know why he feels this way, and how to prevent it.  The next day I asked the bus driver how he did, she confesses that he cried for the longest he has ever cried on the bus, about 10 minutes, and that upon arriving to school, he didn’t want to get off of the bus.  I had warned his teacher when I got to work, that he was on very little sleep.  In the daily communication log book that comes home with him everyday the teacher’s comment was ironically that he had had a great day at school.  

So a little while later I am awoken by what is becoming my most dreaded words to hear, “Bathroom”.  There is really nothing I can do, I can’t say “no, go back to bed. It was better when you wet the bed.” Because it’s just not true.  I think a lot of accomplishments are going to come with these little set backs with Holden, but they are still accomplishments.  So I tell him to go to the bathroom.  He does his thing, and I usher him back into bed, and say “Go back to sleep Holden”.  This time he doesn’t laugh, he doesn’t start goofing around, he lies down and gets comfortable.  He is clearly making an effort to go back to bed.  He tries for about ten minutes, then starts to talk a little to himself.  I tell him to go back to sleep, and he quickly settles down.  He rolls back and forth a few times over the next 15 minutes, finally settles in and is asleep about 30 minutes after having woken up.  By far the best he had done so far.  I am so ecstatic that I forget I am trying to go back to sleep myself, and end up loosing sleep thinking about what was different this time.  Was it because of his bad day?  Was it something I did?  Something I said?  I feel like the superstitious baseball player, I need to touch my cap, adjust my cup, take three practice swings, then touch my cap again, before I step up to the plate.  The thing is, when something works with Holden, it can often work for a while, but what was it?

Well last night those now spine chilling words were spoken again, “bathroom.”  I got him back in bed as soon as he was done.  I told him to go back to bed, and he immediately settled in, and was asleep in about five minutes.  I don’t know if this was a an exception to the rule, or not.  I honestly think he learned from the day he lost sleep, but I may never know.  I know the next time I am awoken again, I will not assume he will go back to bed, you just never know with Holden.  I may touch my cap, adjust my cup, take three practice swings and touch my cap again though, hell I’ll even try doing the Hokey Pokey if it gets him back to sleep.

Stewardess' Know Best

One of the most difficult aspects of having an autistic child for me, is admitting that sometimes I need a break from my autistic child.  It took reading a lot of other peoples blogs, and having Regional Center case workers, teachers, and friends telling me that I need to take a break, to accept that I do in fact need to take a break.  On top of that, I am an introvert, which despite what some people think, does not mean I hate people (well, not all people).  It means that I recharge my emotional batteries alone.  Extroverts recharge their emotional batteries around people.  It has nothing to do with being shy or social either. There can be shy extroverts and social introverts.  It just has to do with how people recharge and refresh.  It becomes very complicated though, because as a parent I feel guilty for feeling like I need time away from my children.  It makes me feel like I am putting my own needs above his.  Then there is the fact that I have a second child that would like some one on one time with his dad, and deserves that time.  As of very recent, the Regional Center has allotted me 16 hours a month of time that I can use to get a break from my autistic child, it is called rest-bit.  I am in the process of getting one of my nannies signed up for it, so she can start watching Holden for 16 hours a month, paid for by Regional Center.  I can not use that time for childcare while I work, it has to be for leisure time.  

One of my pet projects, is talking to the neurotypical siblings of special needs kids, in the attempt to better serve Zane’s needs.  What they all say, is that it is the time that their parents made for them, that made all the difference in the world, for them.  Their parents taking the time, to set time aside for them!  Last school year I was doing this out of pocket on Thursdays.  Zane and I would spend 4 hours away from Holden, doing what Zane wanted to do, for a change.  Unfortunately I couldn’t afford to keep this up.  This year, I intend to use my Rest-bit time to reinstate the important one on one time with Zane.  Four hours a week is honestly not a lot of time, but I think that it creates two things for Zane.  One, it gives him the sense that his needs are important to me.  It also gives him an opportunity to chose how to spend that time, which I think will help teach him time management.  The second thing it gives him, is something to look forward to, and plan around, the rest of the week.  I think these are both two very important things for Zane, and I am very grateful that the Regional Center appreciates the need for that time.

As for me, I try to use my weekdays off of work to find a little time for myself, while the boys are in school.  Unfortunately there are a lot of outward forces working against that.  For one thing I have shopping, cleaning, and laundry to do.  I also have meetings for Holden that usually get scheduled on those days as well.  As well as other things that are out of my control.  I confess I long for those moments because they don’t only help me, but they help me be a better parent to my two boys.  They are also guilt free moments, because the boys are in school.  Nothing makes me feel guilty more then losing my patients with the boys, and it certainly happens.  I think at times we have to look at it from the stewardess’ perspective.  “In the unlikely event of cabin depressurization, oxygen masks will drop from the ceiling.  Place the mask over your mouth, the bag will not inflate, but oxygen will flow through.  If you are travelling with children, secure your own mask first!”  Secure your own mask first! Why? Because we are no damn good to our kids if we are dead!  We are no damn good to our kids if we are in the nut house, drooling on ourselves, playing with our own excrement, in a padded room.  We are no good to our kids if we are rocking back in fourth in the corner, hugging our knees, talking to ourselves.  Not everyday is a depressurized cabin on a plane, but then a depressurized cabin on a plane probably happens over a long period of time.  That despite safety checks, and scheduled maintenance, things can go wrong.  Sometimes, it’s little things, over time, that build and build until our brain loses cabin pressure, and it’s our soul that finally tears from being weakened.  So it’s important that we try to maintain cabin pressure in our lives, and find the time to conduct scheduled maintenance, and know that even when we do everything possible to prevent sudden cabin pressure loss, things are going to come up, and they will affect us.  None of us honestly have the time to conduct regular maintenance on ourselves, but we need to understand ourselves well enough, so that we know what is going to for sure cause sudden cabin pressure loss, that way when those things we didn’t expect come along, we are not already at the bursting point.  I am a single parent, with an autistic child and a neurotypical child, there is no time for scheduled maintenance, so I really try to know myself, and trust to know myself well enough, so that no oxygen masks are going to be dropping from the ceiling anytime soon.  However, I don’t have control over, well . . . anything.  Life is not a model, life is not in a vacuum, and we can’t predict anything.  When you add outward forces that are completely indifferent to you and your cabin pressure issues, well lets just say you have to be ready to accept that life is going to throw everything it can at you! And if it doesn't, thank who ever you thank that night, get some sleep, because you know you will be flying the friendly skies again tomorrow!

The Buck Stops Here

There are many aspects to raising an autistic child, that I would have never thought about before I had one.  Even having worked with autistic kids in the group home setting, there were still aspects I had never anticipated.  Probably one of the most obvious aspects is cost.  There was recently a New York Times article that pointed out the cost of raising an autistic child, http://www.latimes.com/health/la-fi-lazarus-20111011,0,854035.column .  For me, the most expensive part is childcare.  Holden has not done well in day-cares, some have out right said they can’t handle him, others have said he could come, but then call everyday after and hour or so and say they need me to pick him up, because he is not “Cooperating”.  Uh, you think?  Even his private music therapy, which I had to put on hold, is much cheaper then childcare.  On a good month, I pay around $1500.00 a month in childcare, on a bad month (meaning kids out of school, like summer) it can be as much as $1900.00.  Zane is not really even a factor, it’s all Holden.  There are more expense that arise, but this is the biggest for me.  This stretches my budget so thin, that there really isn’t much left for anything.  Someone was asking me why I haven’t started dating, I have been “single” for quite long enough in their opinion.  Well, lets see, I can’t even afford to go out to Starbucks and buy coffee for two, I can’t afford a baby sitter just for fun, and oh yeah, who wants to date a guy with an autistic kid, talk about baggage.  I am actually fine being single, but I feel Zane if very affected by out lack of extra money.  

Obviously all kids want toys, and certainly don’t want to hear no for an answer.  Even if I had an unlimited amount of money, I am sure Zane would want more.  However, there are times when we have to stretch everything, even certain food items out.  That is not to say there is no food, but I may ask Zane to drink apple juice, instead of milk, because I need the milk to last a few more days.  As far as frivolous things, well I just can’t afford it.  In the good old days, we would often go to Soup Plantation on Sundays, and Barnes and Nobles for Hot Chocolate and a cookie on Thursdays.  That had to turn into Slurpee's on Sundays.  Which has turned into Slurpee's once in a while.  I think Holden enjoys doing all those things, but when we don’t do them, he is unaffected.  He is just as happy hiking on dad’s shoulders, or running up and down the beach.  Zane on the other hand, does think about it, and miss it, and craves it.  He remembers the days of Dad bringing him home gifts when he got home from work too.  He got so used to it, he would often ask me what I got him, before even saying hi to me.  There is no question that during the good times, I probably over indulged in things for Zane, and that adds to his wanting more now.  Still I don’t blame him, I miss going to Soup Plantation on Sundays too.  I miss being able to give him treats from time to time, and being able to go to a street fair, and not come back empty handed.  

The hardest part is trying to make him understand that it is not his brothers fault.  This is the greatest source of animosity for Zane.  It becomes his white whale, and he Captain Ahab, totally and completely obsessed, and tortured by it.  He will try to get me to join him in his hypothetical scenarios: “What if Holden hadn’t been born, wouldn’t life be better for us?”  I refuse to join in, and get that sickening feeling in my stomach, as I have to acknowledge in my own head that, yes it would be.  That doesn’t mean I would change anything for the world.  Holden has added such a dimension to my life, and changed me in so many way, for the better!  When I refuse to join him in his hypothetical dream world, he goes after his next target.  Even if I believed there was a responsible party for our current financial hardship, I don’ think it’s healthy for Zane to have a target for his wrath.  As it is, I do not believe there is a responsible party, and we simply need to make the best of the situation, and be happy we have a roof over our heads, clothes on our backs, and food on the table.  It’s possible that Holden may be able to go into a daycare situation in a few years.  It’s equally possible we will move to a community where there are actually special needs day-cares.  These do exist,  just not where we live.  There is actually one I have read about, that is even open on Saturdays, but is a few towns over.  In the mean time, I try to take responsibility for our situation, and Zane doesn’t like it when I do that.  He would much rather blame other people, then blame me.  Most of the time, he is fine with our current situation, but then he gets reminded of the “good ole days” when he wants to indulge in a pizza, or Rubio’s, or Starbucks.  

The Popeye Syndrome, "I Yam what I Yam"

Recently I have received quite a lot of praise on behalf of the boys and myself.  For a lot of reasons I am not completely comfortable receiving the praise that is directed at me specifically.  For one thing, I only contributed half of the DNA that went into creating these two lives.  Even so, I tend to believe that we are more then our DNA, that the choices we make in life dictate so much about who we truly are.  We can profess to be anything, but it is our actions that truly define us.  Who would I be, if I called myself an environmentalist, but then didn’t recycle, or reuse, or reduce?  Am I what I say I am, or am I the choices I make, and the actions that come from those choices.  I don’t believe we are predestined to be something, or succeed at something, or fail at something, simply because we are born with a specific set of DNA.  John Nash is a great example of someone who was born with schizophrenia, and taught himself how to over come it.  He did not cure himself, he is still schizophrenic, but he has learned to filter out delusions. Likewise, in all honesty I haven’t raised these children completely by myself, their mom was there for quite a lot of it, and even now is involved from a distance.  She also contributed half of the DNA that created these two lives.  In spite of any genetic markers I may have contributed, like Mr. Nash, they can learn to over come them, if that is their choosing.

Then there is the fact that I feel Zane is on a great path of his own, and that I just nudge him from time to time to stay on course.  He is accepting more and more responsibility, he listens and learns from my experience, and is willing to try things I suggest.  I let him make a lot of choices of his own, and allow him to try things that I know won’t work, so that he can see for himself.  I feel like a lot of the praise that I receive on his behalf, should be directed at him, not me.  He is truly beginning to grasp that there are repercussions to our actions, and that those actions lead back to our choices.  As I stated in my last post, he still tries to deflect responsibility when things don’t go the way he planned, but even his accepting “partial” responsibility is improvement from the past.  I feel like a music teacher who has an exceptionally gifted student, and is given all the credit for his genius.  If credit is going to be given to me for Zane, then I have to take credit for his sarcasm, dark moods, and explosive temper, because I have all of those too.  I am sure if I were not so technical, and prone to arguing, he wouldn’t be equally prone to those as well.  Zane is very compassionate, while there are many who would say I am the only living heart donor.  What traits do I accept credit for, and which do I claim are not my fault?  Do I rush to take credit for his accomplishments, then blame his short coming on others, or him?  

As far as Holden is concerned, I simply do what must be done.  None of us know what we are capable of, until we are put to the test.  The Navy Seals say they put those wanting to be Seals through the hell they put them through for two reasons.  One is to be able to get the best of the best.  The other reason is to show the future Seals that they are capable of pushing their own bodies much further then any of them are aware of.  That when it comes right down to it, physical endurance is actually mental strength.  Nobody knows what they are capable of, until they are put to the test.  I am not in any way, shape, or form, trying to say that what I do is anywhere near as difficult as what the Navy Seals go through, but rather express to all those who say “I don’t know how you do it” that we are all capable of much more then we think.  I hope they are never put to the test, but I suspect when they are, they will find that they simply do, what must be done.  Holden was a particularly difficult test for me, because patients with others is one of the many things I lack as a person.