"Epiphany"

I was watching some videos by a really cool artists who goes by Prince Ea.  On his Facebook page he actually refers to his page, and what he does as: Fitness-Music-Inspiration.  He has a catchphrase that is “I Make Smart Cool”.  He does these 60 seconds of wisdom videos, makes music videos, and does some really cool spoken word stuff too.  ***Warning*** some of his stuff is explicit.  He did this awesome rap called “Backwards Rap” that is very creative (https://www.youtube.com/watch?v=xUcJRKVuPak).  His spoken word piece “Why I Think The World is Ending” (https://www.youtube.com/watch?v=itvnQ2QB4yc), is beautiful, insightful, honest, and motivating.  In one of his 60 seconds of wisdom videos, he finishes the video with a quote, a nugget of old wisdom. “Seek to understand, before you are understood.”  I don’t know who originally came up with the idea, but if you do a google search, you find that everybody and their brother has used it.  It shows up a lot as a good habit of mindful people, and mindful living.  I think it is an awesome concept.  I tend to be someone who listens, more than talks.  Quite often when I am really upset about something, and it is bothering me, I will call a friend, but instead of venting my problems, I will ask them how they are.  Quite often they unleash some frustration of their own, that I listen too, and offer any words that I can to help them.  I leave myself out of the conversation though, and just listen or try to help.  By the end of the conversation, I feel better about my own issue, and the friend on the other end of the phone also feels better.  It is a win/win situation.  

This quote, concept, ideal… whatever you want to call it, happens to apply very well to raising an autistic child.  Once again, it also applies to neuro typical children as well, as is often the case.  Sometimes I feel like Holden’s In Home Behavioural Therapist gets so caught up in trying to teach Holden flexibility, tolerance to transitions, and expressive and functional communication, that he forgets to try and understand Holden.  Holden has recently shown a propensity for paraphrasing his scripts.  Allow me to explain what the hell I am talking about to all of you who do not have children on the spectrum.  Scripts are phrases that Holden can use in particular situations.  We don’t make a whole lot of specific scripts for Holden, like some people do with autistic kids.  What we do is offer answers, when he is responding inappropriately.  For instance if a video doesn’t work on Youtube, rather than him screaming, yelling, and biting himself, we would suggest he say something like “I am frustrated”.  Essentially he already is saying this, but in the language that is easiest for him to communicate in i.e. screaming, yelling, and biting himself.  So we try to give him a different way to communicate.  If someone says “See you later” to Holden, we may tell him “Oh, Holden you could say ‘okay, bye (insert persons name)’” and ask him to make eye contact with said person.  Lately though, you can give Holden a script, and he says Screw you, I’m saying it my way (not literally).  For instance I can say, “You need to ask me ‘Dad, can I have a glass of lemonade please’” and he will come back with “Dad, I want more juice please”.  I think this is awesome, because 1) he is coming up with his own way of asking, and 2) it shows he completely understands what I am requesting of him.  So when he is asked by his therapist to place his shoes by the door, and Holden walks over to his shoes and puts them on, the therapist will say “Let’s try again, I said put your shoes by the door.”  If you give Holden a little latitude though, you will find he will never pick up his shoes and carry them to the door, he will instead put them on, walk over to the door, and then take them off by the door.  Is this the most efficient way to put your shoes by the door? perhaps not, but it is effective, and fulfills the requirement.  I have learned to give Holden a chance, so that I can understand him, before I need him to understand me.  Sometimes I find that he is just doing something in his own way.  That doesn’t mean sometimes he isn’t  just trying to avoid doing what he is supposed to do, but I don’t want to jump to that conclusion first.  I have learned to not get frustrated with the therapist either, he works with several kids, everyday.  For the 10 hours a week that he is here, I let him run the show, for the other 158 hours of the week, I give Holden more leeway.  Sometimes it pays off, and I get to understand him, and sometimes it doesn’t, then I help him understand me.  I just want to make sure I give him the opportunity to be understood, before I require him to understand me.

p.s. The picture below is the specific generic profile pic that Holden likes to use on some of his accounts. He will have me change out a different generic profile pic, to this one.

"Thank You For Letting Me Be Myself"

The passage of time is such an odd thing.  We have all experienced the phenomenon by where time seems to go slower, when we want it to go fast.  Like wise at times it seems that time is moving so fast, that we fear we are being left behind.  As I watch Zane go from the tiny baby I held in my arms so many years ago, to the young man he is becoming, I can’t even begin to comprehend where the time went.  I begin to wonder, have I done a good job raising him?  Will he turn into the man I hope he does?  Ironically, I can no better predict the future for  Zane, than I can for Holden.  The main difference is, that if things proceed as they have been, then Zane will be an independent adult someday, the same can not be predicted for Holden (Though still very possible).  

As Zane approaches adulthood, I find myself wondering how best to guide him.  What principals I would like to bestow on him.  The one word that kept coming back to me was gratitude.  Zane and I recently had a long talk about gratitude.  It is so easy for kids to get hung up on the things that they don’t have, that they become blind to the things that they do have.  Actually adults can be guilty of this too, but I am not burdened with the job or instilling values on the world at large, and I am SO grateful for that fact!  So I sat down with Zane when he was having a particularly negative day, and explained to him that for everything he was feeling negative about, I could tell him how it was a positive thing.  He didn’t believe me at first, but we started to go through his mental list, and was genuinely surprised to find that I could indeed give him a realistic, positive value for things that he was feeling negative about.  It was really special to see him truly take in what I was telling him, and start to watch the change in his whole body.  I went on to express how incredibly grateful I am for him and the life we have.  This was the one concept that seemed to really shock him.  He couldn’t see how my life was something to be grateful for.  I have to explain a little here, Zane has had to witness things, that I should have probably taken the time to explain at the time.  For instance:  When Zane was still pretty young, I loaned the drummer in my band at the time, an extra vehicle I had, because his had been repossessed after he hit some hard financial times.  He proceeded to get a DUI in it, and get himself, and my vehicle thrown into jail (well impound for my vehicle).  I was honestly not very happy about the situation, for one thing I was probably liable if he had killed someone.  Also, it created quite a bit of work for me, as I had to get it out of impound as quickly as possible, because impounds charge for storage by the day, and it is not cheap.  This was exacerbated by the fact that I didn’t even know this occurred, until I received a letter in the mail saying my vehicle had been impounded, because this person had gotten a DUI in it.  Yes, you read that right, he didn’t tell me, I had to find out from the police.  Less then a year later, I loaned a guy doing construction across the street from my house, my World War II Jeep trailer.  As odd as this might sound, I loved that trailer.  I used to hook it up to my Jeep, and take it out on Cruise Night in Escondido (a weekly classic car show in the summer in Escondido).  The worker had been borrowing tools from me for over a month, and had returned every tool he had borrowed, so when he asked to borrow the trailer, I didn’t hesitate to say yes.  It was the last time I ever saw the trailer.  In all honesty though, if I had it all to do over again, I wouldn’t do anything differently.  I will probably never be rich, or be able to help the world on a big scale, but if I can make someone else's life better, well then I have made the world a better place.  I’m not saying I improved either of the above peoples lives, but I continue to live my life in a way, that I will give freely of myself.  Why????  Because I am so grateful for the life I have lived.  I have friends that love and respect me...for me.  Friends who care so much about me, and send me reminder notes that tell me someone cares!  I have had some amazing adventures in life too, from the time I was a little kid.  I started playing guitar in 6th grade, and the adventures soon began to follow.  I started playing music in bars at sixteen, I toured with my high school Jazz band, out of country when I was fourteen (Including the 1986 World Expo in Canada).  I played for Ronald Reagan with that same High School Jazz band, while he was president of the United States.  I was able to attend San Francisco State University, and get my BA in music, but more importantly make friends that would change my life.  Friends that made me feel like I fit in.  I toured the US and Europe as a Roadie, mainly for Toad, but also other bands.  I got to play on National Television, National syndicated Radio, and perform in front of millions of people live.  I get to play music with my son!  These are just some of the adventures in music, there are so many more, and plenty that don’t involve music.  So I would have to be a fool to not be grateful for the life I have lived, and continue to live.  As I told all this to Zane, he actually started crying.  He was so overwhelmed by my gratitude for the life I have, because sometimes all he sees is the daily battles of life with an autistic child.  He sees the ugly bruises on my body, and thinks I must be suffering so much.  

I will admit, sometimes it gets rough.  There are days where I am running on way too little sleep, and I am being pushed well beyond my patients level.  But even on those days,  I am still so grateful.  There is always something to be grateful for.  Every night when I write in my journal, the first thing I write is “I am so grateful for all the things I have in life.  Today I am grateful for…”  My philosophy for life, is live in reality.  It seems so simple.  If I live in reality, I am forced to realize, my life is pretty damn awesome!  The one thing I hope I can instill in Zane is gratitude.  If he learns to be grateful, then everything else will fall into place.  Being grateful, forces us to look reality in the face, and appreciate all of it.  The good the bad, and the ugly.  It is all so special, because it means we are alive!

"Is There Anyone Out There"

I had a request to write on a specific subject.  I actually think it is a great idea for a blog.  I have been turning the idea over in my head for quite some time now, wondering how to approach this particular subject.  I could easily see myself going off on so many tangents, that it turns into a novel, rather than a blog.  The idea of breaking it up has occurred to me, but if I do that, do I write the whole thing first? or just fly by the seat of my pants and plunge into it, with no end in sight?  One part of me wants to tell it in a bunch of stories, but then it kind of loses the continuity.  By now most of you are probably saying just shut up, and write it.  Okay, “and here we go…”

Holden was born on May the 3rd, 2005.  From the beginning everything about Holden was easier than Zane.  His birth seemed much more routine than Zanes had by far.  He was a lot quieter baby than Zane was.  Zane had Pyloric Stenosis as a baby, which basically means he barfs up everything he eats, until he gets the condition fixed.  As new parents, people didn’t really believe us, that anything was wrong with Zane.  People would say, “All babies spit up”.  Okay, fair enough, but Zane was barfing, puking, up-chucking, throwing-up, going into turbo reverse, selling Buicks to a guy named Ralph, NOT spitting up.  Eventually people started to witness Zane the amazing human regurgitation machine in action, and these same people who were so quick to point out that all kids spit up, where now telling us to let them know if his head spun all the way around.  After some trials, and miss diagnoses, Zane was finally properly diagnosed, and had surgery at the ripe old age of 6 weeks old.  Needless to say, Zane was not very happy pre-surgery, and his first few weeks of life were quite a test for his mother and I.  

So along comes this second baby, four years later (gee I wonder why we waited so long).  He slept better, ate great, fussed WAY less.  We thought “wow, this is what it’s like to have a normal kid”.  I guess I don’t need to explain just how wrong we were.  Holden continued to progress, and make some great milestones in terms of his physical ability.  He crawled early, was standing early, and was walking by 10 months.  We were quite pleased with his progress.  There began to be some other signs though.  He did not coo as much as Zane had. When crawling around on the floor, he would pick things up, and stare at them for the longest time, where Zane would just stuff it in his mouth and move on.  I really thought we should have named Zane Hoover, instead of Zane. Also Holden would take off his diaper, as soon as he wet it.  We thought, “wow, he is going to be so easy to potty train.”  As it turns out, he did potty train earlier and easier than Zane, but he would also use his excrement as bathroom chalk.  I began to feel like there was a disconnect with him too.  I would play games like “where is daddies nose?” with him, with little result. He wouldn’t respond to his name, or make much eye contact.  This was at about one years old.  His mother and I had both worked with developmentally disabled kids, his mother WAY more than myself.  Autism was a well known term in our house.  I began to ask his mom if she thought he might be on the spectrum.  She said I was comparing him to Zane too much, and that kids progress at different speeds.  I didn’t exactly disagree with this concept, but it was more than developement.  It was a lack of connection to those around him.  He also wasn’t developing language.  Again, his mom explained that second children often speak later than the first, because the first won’t shut up long enough for the second to say anything.  Zane certainly fit this profile well! Still, I couldn’t get rid of the feeling that there was more to it.  

Holden learned to potty train at two years old, but still language was almost non-existent.  He had freakish upper body strength even as a baby.  He would push off with his arms while you were holding him, and you literally had to catch him, or he would push himself right off of you.  As a two year old he could pull himself up onto a counters and furniture, with just his arms.  By three he was able to climb a six foot chain link fence into the pool area, where he would proceed to jump in the pool fully clothed. By four he was making it over a regular six foot fence,  yet still language was nill.  By this time his mother was also in agreement that something was up.  We enrolled him in preschool at three, and discovered that he was galaxies behind his peers.  The preschool said his language (and inability to focus on anything) would prohibit him from being able to remain in that class, and recommended first five to us.  We took him to first five, and they initially thought he was just speech delayed, but after a few sessions, and one frazzled speech teacher, it was clear that that was not the problem.  This began the battery of tests, and interviews, and assessments, by every specialist you can think of, that ended with Regional Center diagnosing him with autism at four years old.

The whole process of having your child assessed is such a difficult one.  As parents with kids on the spectrum find, in the beginning, you want to believe with all of your heart, that they will find he is really not that far behind, and everything will be fine.  A few years into being a parent with a child on the spectrum, you want him to perform horribly on assessments, because that means more services.  I have written about this before, and could probably drag you all through those memories, but I think we accomplished what was asked of me, in terms of writing on a specific subject.  I will say this, if you think your child might be on the spectrum, even if it’s just a gut instinct, run with it.  The earlier you discover there is a problem, the more that can be done to help EVERYBODY involved.  If you have no one to go to, contact me!  You can contact me through my non-profit at www.artistsforautismawarness.com, I will personally respond to you, and answer your questions.  Ask anybody who knows me, I will write you, text you, call you, whatever you want!  No parent should feel alone in this!

I Have to make a quick note. The picture below is one of my all time favorite pictures of Holden and me. I use it every chance I can. I figured since this blog is about Holden's first few years, this picture works!

"I'm Free"

Another summer has come and gone.  Holden and Zane are both back in school today.  Summer is a time of choices for parents.  How much do we make our children work? How much do we allow them to play? What will their bedtimes be?  etc…. When you have a child on the spectrum, summer presents a whole different challenge.  First of all no two kids are alike, and that is so true of autistic children as well.  There is a saying in the ASD (Autism Spectrum Disorder) community: “If you’ve met one child with autism, then you have met one child with autism.”  So I don’t want to generalize here, but at the same time, there are certainly certain characteristics that not only represent ASD, but actually are used to diagnose ASD.  One of them is a strong need for structure, and the other is an inflexibility to change and transition.  These are very common traits among ASD people.  So summer presents quite a challenge for parents of kids on the Spectrum.  Lets face it ALL kids like structure, but the fallout isn’t quite as bad with neurotypical kids.  It becomes the parents or caregivers job to try and fill in the gap of that structure.  Holden went from having school everyday from 8:15am till 2:50pm and then “in home therapy” from 3:30pm till 5:15pm.  So a huge chunk of his day was structure.  As I previously stated, the first week of summer, Holden’s therapist was out with an injury, so he went to NOTHING!!!!!!!  I tried to fill the gap as much as possible, but Holden didn’t do well at all.  That was such a huge change.  When summer school started it helped a little, then his therapist came back towards the end of summer school.  However, by that time, damage had been done.  He had backslid a whole lot.  There is always a backslide at the beginning of summer, then we work our butts off, get in a great rhythm, really start making progress, then the summer ends, and there is another backslide at the beginning of the school year.  If you think this is frustrating, you are right.  We reach all time lows in the summer, and work our way out of this deep back slide (this years exacerbated by previously mentioned incidents) claw our way back to some slight resemblance of where we were, and then we climb forward.  This isn’t like climbing a ladder, or walking up a hill, this is Everest! This is ice boots, ropes, a pick, and progress of a few inches an hour, in air with no oxygen in it.  But we bunker down, we tie on our safety ropes, we harden ourselves to the climate, and we celebrate each inch we make of progress.  All the while knowing we are going to slide down half or more of this insane climb we are making.  Yet this is the gig.  This is what we do.  This is how we help our children through the summer.  

Personally every year I dread it.  I feel bad for all that have to witness it.  Zane has had to witness every single one of Holden’s summers, and I feel bad that he has too.  There are tools I use to help cope.  I journal everyday, I go for jogs, read, write, play music, all while Holden is asleep.  When he is awake… I attend him… Non stop… All day long!  You can’t relax around Holden, the minute you do, he is lighting something on fire, running out the front door, trying to grab a knife, throwing his iPad across the room, trying to punch a window our, flinging my personal belongings across the room, tearing down curtains, pulling on the dogs ears, eating his boogers, playing with his saliva, walking on the edge of the trampoline, outside the net, pouring dirt on his head, biting, kicking and pinching me… well you get the idea :).  

So when school starts, like today, we feel like we are Atlas, and somebody just took the world off of our shoulders.  Like we can breathe for a second, like we can relax for a second, like we can actually go to the bathroom and not be on high alert.  Take a long shower.  I could tell you some pretty harsh stories about our summer, but that isn’t what it’s about.  Those moments are a byproduct of a bigger picture.  What is really important, is that we made it through another summer, in which we made it past the back slide, and made progress.  We can look back and see every inch we climbed, and know that we came out above our starting point at the beginning of summer.  I know there will be a backslide over the next few weeks, but that backslide will slide down to a point higher than the end of last school year.  The work never ends, and sometimes it feels like one step up and two steps back, but we are making progress damn it!  We all have the scars from this great climb, but they were all worth it in the end.  So for now, as the kids are in school… “I’m Free” “And Freedom Tastes of Reality”.

"Birthday"

Last Sunday I took Zane to what he said was “The best day of my life so far!”  We had a very fun day, that was very special.  Before I get too far into the story of our day I have to give a little background information to my newer readers.  Before I had kids, I had the distinct pleasure of working for the band Toad The Wet Sprocket, up until the day they broke up as a band.  I worked for them throughout the nineties, starting with a concert I promoted for them in 1991 for Fear, and ending with being one of their guitar techs on the Coil tour in 1997 through 1998.  I even worked a few days loading gear into a studio when they were going to start making their next record. . .  a record that ended up being put on hold for something like 17 years, because the band broke-up.  For those of you who follow Toad, that  break-up ended officially a few years ago, and unofficial even earlier.  When they started touring again, I was able to go back out on the road with them for some of their tours.  As Holden got older, it became more and more difficult to get away.  As Toad got closer to releasing their new CD, their tours were getting longer and longer.  Eventually they had some personnel changes, and they didn’t need me anymore.  Honestly I had become a huge pain in the butt anyway, because it would take me so long to commit to a tour, because I had to make sure Holden was taken care of back at home.  However, I have maintained a good friendship with the guys in the band, who happen to be among the sweetest humans alive.

So, last Sunday Zane and I had a full schedule for the day.  First we were going to stop by a very old friend of mines house, for a birthday party/house leaving party.  This friend is a touring musician himself, and for years I always hoped we would run into each other on the road.  We had some really close misses, but it never happened.  So when he invited me to his party, I decided to take Zane and go.  It was SO great to see this old friend, and his party was full of musicians jamming music.  Zane and I would have had so much fun hanging out at this party all night, but we had to leave after just over an hour, to head to our next adventure of the day.

Toad was ending an over 2 month long tour with the Counting Crows at the Greek Theater in Los Angeles.  The band was nice enough to provide me with passes for the show.  Zane and I got to watch the whole show from the side of stage, then hang out backstage, and latter on the tour bus.  My whole reason for telling you all this, believe it or not, is not to brag, but rather to express how incredibly Zane handled himself.  At both the party and the concert.  As I have stated in previous blogs, Zane is really into music, and plays a few instruments himself.  He was so comfortable sitting back and soaking in the music at the party.  At the concert, he had a great time, and honestly conducted himself better than some adults I have taken backstage at shows.  It wasn’t his first show. On his ninth birthday I worked a Toad show at Pershing Square in Los Angeles, and brought Zane along.  He had handled himself quite well that day as well, but he admitted that this one was a lot more awe inspiring of a venue, than the Pershing Square show, which was basically in a park.  I would love to take credit for how great Zane is, but in truth, I honestly haven’t been able to focus on Zane as much as I could have, owing to Holden.  I have always made it a point to spend time with Zane.  While we lived in Escondido, and I worked a regular 9-5 job, I had hired a nanny to watch the boys while I was at work. I paid for an extra 4 hours every week, so I could take Zane out, while she watch Holden.  Now that his mother and I live in the same area, I take Zane for a whole day every Saturday, and she takes him for the whole day every Sunday, without his little brother.  I have always felt that this is really important for Zane.  As I said though, I can’t always give him my attention.  I already told this story on the blog, but once I was helping Zane with his homework, we were at the kitchen table, and Holden was in the kitchen with us.  He took a dryer sheet and put it in the toaster over.  I heard him twist the power button/timer on the toaster oven, and immediately got up to check on him.  The dry sheet had slipped through the grill and landed on the heat element and had already burst into flames, just in the time it took me to walk from the kitchen table to the kitchen counter some 10 feet away.  So even when I am focusing on Zane, I have to stay focused on Holden, and can’t completely focus on Zane.  None the less, Zane is a damn cool kid.  He is happy, and communicates well with me and his mother.  He loves music, likes to write stories, and loves anime and video games.  He has his own ideas and ideals, a quirky sense of style, and loves strange things.  He is also a moody teenager from time to time, and pushes his limits.  All and all though, he is a damn good kid.  I am very proud of the person he is growing into.  As he becomes a teenager today, I hope that these formidable years go well for him.  I hope we can stay as close as we are, and have our special bond last through his teen years, and into adulthood.  

Zane has said on multiple occasions that he feels lucky to have a father like me, I don’t really know what he means by that, but I can tell him, I feel damn lucky to have a son like him.  Whenever you ask Zane about his life, he always laments that his parents aren’t together, and that his brother has autism, but then he gets this little grin on his face and expresses how our unconventional life seems like a lot more fun than other peoples conventional lives.  I have to agree!  We may not be your standard nuclear family, but we have a lot of fun in an unconventional way.  You won’t see us winning any family of the year contest, but you might very well hear us singing at the top of our lungs, driving around town, or jamming music together, or maybe even backstage at a concert.

(p.s. the title “Birthday” refers to the beatles song.)

"Good Morning"

Life with an autistic child is often about routine and consistency.  As a parent I do a lot of priming when we do anything that is out of the ordinary.  It basically consists of explaining what is going to happen, and hopefully Holden understands, and doesn’t get the wrong idea in his head about what is about to transpire.  Priming is a great tool, and works really well a lot of the time.  I even prime him when I put him to bed at night, by telling him it’s time for bed, then asking him a question he knows very well. “If you wake up before the sun comes up, what are you supposed to do?” to which he responds “go back to sleep.”  I wish I could tell you that this bit of priming always works, but unfortunately it does not!

On any given day Holden wakes up between 3:30am and 6:30am, it doesn’t matter what time he goes to bed.  If he wakes up in this range, he is basically up for the day.  Sometimes, maybe 20% of the time, I can get him back to sleep if he wakes up at 3:30ish, but it will take two hours for him to go back to sleep.  If he wakes up before 3:30am, like 2am, I have about a 75% chance of getting him back to sleep, and it will usually take around 30 minutes to an hour.  The fun doesn’t end here though, because no matter what time Holden does wake up, within about 5 minutes he is fully awake, and ready to make lots of noise.  As you can probably imagine, I can’t let him make as much noise as he would like, he would not only wake up the household, he would wake up the whole neighborhood.  So what do you do with a nine year old autistic kid full of energy, and making lots of noise?  That is a damn fine question…

Let me first set the stage for you.  Holden and I sleep in the same room.  We have separate beds, but as he is a flight risk, I really don’t feel safe with him in his own room.  Most of the time when he wakes up, and I am not in the room, his first instinct is to track me down. Let’s face it, Holden’s attention is very easily diverted though, so he may set out to find me, but end up taking a 3:30am stroll down the street, or play with the toaster oven, or the microwave, or anything else that he tries to get himself in trouble with.  I am a pretty light sleeper, but I am often running on very little sleep, so I don’t want to risk not waking up.  So we share a room (currently we also share the room with a dog, this will become amusing later).  When Holden wakes up, there is about a five minute window where he tosses and turns as he is coming out of his sleep.  He is often still breathing fairly deeply at this point.  I usually wake up, immediately check the time, and decide what I am going to do next.  Assuming I am not going to try and get him back to sleep, the following occurs.  As if they have been planning this for hours, at the exact same time, Holden gets out of his bed, and comes into my bed, while crossing the dog, who gets out of my bed, and goes to Holden’s now empty bed.  I can only assume the dog also wakes up when Holden starts stirring, and waits for that inevitable moment that Holden with transfer over to my bed, to transfer to his.  I don’t even have a clear idea when or why this ritual began, but I can tell you that Holden is already pretty hyper by this time, and will proceed to launch himself on top of me, and roll around on me, while giggling and attempting to bite me.  Here is what is so odd about the dogs behavior.  If I were lying on the couch, and Holden decided to jump on me and do the same antics, the dog would get jealous, start barking at us, and try to climb on the couch with us, while nuzzling and nipping at us.  Yet he seems to understand that in the morning, I am trying to get Holden to remain quiet and calm, and he leaves me to that task, while continuing his morning sleep.  

After they play musical beds, I spend the next few hours trying to keep Holden quiet and calm.  The magic time I am shooting for is when the sun is up, and it’s light out.  Then Holden can have some iPad time before breakfast and shower time.  I don’t want to give him the iPad when it is still dark out, because I know he will just start waking up earlier and earlier to gain access to it.  He knows he won’t get the iPad until “My sun comes up.” Apparently Holden own’s the sun, cause he always say “When my sun comes up.”  You can even ask him, when do you get the iPad in the morning? “When my sun comes up.”  Of course he still asks for the iPad every 30 seconds, and asks if his sun is up in equal amounts, but it won’t lead to a meltdown (by the way meltdowns are very, very loud), because he has been well primed that he won’t get it until “his” sun is up.  

Those early morning hours, between dark, and sun up, are some of the most difficult hours with Holden.  He gets very silly, laughing and giggling.  He tries to bite me non-stop.  This is not his usual meltdown, “I want to hurt you bites” it is his, “I really need sensory stimulus right now!” bites.  Unfortunately for me, they hurt almost as much.  So I try to keep him quiet, I try to keep his teeth off of me, and I try to keep him from leaving the bedroom.  I have the capacity to lock us in the room, which I use when I am taking a shower, but this will only keep Holden in the room. It certainly doesn’t keep him quiet, he will start knocking on the door, which will escalate to banging on the door.  So this goes on until “his” sun is up, then a whole new set of issues can surface.  

At this point I give him the iPad, and I get in the shower while he is distracted and happy.  He won’t stay distracted and happy for long.  As I have stated before, the iPad can not sustain him for very long.  Eventually he will either have something upset him, like a video that is no longer on You Tube, or won’t load for whatever reason, or he will decide that he wants to go make a video in the living room or the backyard, either way, his contentedness will come to an end.  Hopefully I am out of the shower by that point. I try to keep him reasonably quiet until around 8am on the weekend or summer.  I try to never let him be overly loud, because consistency is important.  Letting him be loud in the afternoon, will lead to him thinking it’s okay to be loud at 3:30 in the morning.  

So if we are ever talking, and I yawn in the middle of our conversation, please don’t take it personally, I have probably been up since 3:30am, after going to bed at midnight, because my only free time is from the time he goes to sleep, until the time he wakes up.  Like as I write this.

"I Love You"

There is an ancient proverb, dating back to the Liao Dynasty that is roughly translated like this: “The probability that someone is watching you, is directly proportional to the stupidity of your actions.”  Okay, well maybe it doesn’t date back that far, more like the bumper sticker era of the 80’s.  None the less, it would seem to have some merit to it.  Nobody is ever around when you pull off a really graceful whatever, but slip and fall in a pool, and it happens during a party where fifty of your closest friends happen to be in attendance.  The digital age has certainly exacerbated the situation, now there are also ten people catching it on video, and it makes You Tube, with links from Facebook, twitter, and whatever else, before we are even home from the party.  I wouldn’t be surprised if short videos have become more popular than television shows, they suit the low attention span of modern time.

It just so happens that one of Holden’s many obsessions is making videos of anything and everything, and posting them on You Tube.  Holden happens to be of the John Cage philosophy when it comes to his videos.  He is happy to have any background noise going on, it just adds to the experience.  Even if it’s something private or personal.  Nothing like having a “private” discussion with his mother about conflicts in parenting, only to find out five minutes later that Holden was filming something in the same room, and our entire discussion is now playing back, while he watches his video that he has already uploaded to You Tube.  Like the not so ancient proverb mentioned above so eloquently states, it seems to never be at the most opportune time.  At first I really didn’t think too much of it, because You Tube has millions of viewers, viewing an uncountable number of videos, and the chance of finding unpromoted videos seemed pretty low.  Then Holden started getting subscribers?!?!?!?!?  I couldn’t believe it.  So I started looking into it more.  Holden has a knack for naming his videos things that have a lot of appeal.  He will call them things like “PBS Kids Logo Mix”.  Even if the video is only of a brief video of PBS logos for about 2 seconds, while Holden sings his own background music, and then pulls the camera away from the logo and films his feet walking across the room.  Still, he gets hits, views, and even subscribers.  If you search You Tube, you soon find that there are a lot of autistic kids posting videos of the same nature.  Holden finds them all the time, and watches them over and over again.  It’s like some secret society, and they are communicating in code.  Having viewed some of these videos, it is clear that a lot of these cinematographers also don’t mind the realism of families living their everyday lives in the background.  My heart immediately goes out to the background voices, as I wonder if they know their conversations are now part of the digital universe to be perused by whomever is inclined to watch videos of the autistic underground network.  Being totally paranoid and believing in conspiracies far and wide, I have tried to decipher the videos of the AUN (autistic underground network, remember, I just said it, keep up please) with little or no success.  The best I can tell, they are forming a plot to take over the government, and install Barney the Purple Dragon (or is he a dinosaur?) as our leader.  In all seriousness though, paranoid or not, I tend to look and see what Holden is doing on his iPad now, before having any serious conversations about anything, with anybody.  It has almost become second nature.  First you begin to express something, then you stop abruptly, look for Holden, check what he is up to, then continue on.  It reminds me of the Bertolt Brecht playlet “The Spy” where two parents argue with each other, then become extremely paranoid when their son is missing, thinking he has turned them in to the SS, only to find out he went down the street for some sweets, yet they remain suspicious of him anyway.  “The Man” is always watching in my home, only he is a nine year old autistic child.

So, if you want to come hangout sometime, please don’t hesitate to stop by.  Have something, or someone, you one to vent about? If you know me, you know I am a great listener, just make sure Holden isn’t innocently singing to himself while playing a “game” on the iPad.  It could be you are under observation by the AUN.

(I now have to write “Walt Disney Home Video Logo Collection, Warner Bros Logo Collection” because Holden is in the room while I finish this, and insists that the piece will not be complete without that in it somewhere. I think it is another code word for the AUN!)

"Can You Feel The Love Tonight"

In two weeks Zane will be entering his teen years.  The flood of thoughts that enter my mind over this concept is like the Mississippi (M I S S I S S I P P I , I always feel like a kid when I spell that!) during rainy season.  Most of the fears attached to those thoughts are because of my own issues pertaining to childhood, and my teenage years.  The great thing is, Zane isn’t me. He never has been, and he never will be.  Honestly he is a much better person than I was at his age, and I have no doubt he will be a much better adult then I have been, when he reaches adulthood. The other great thing is that a lot of the time, Zane is okay with being Zane.  I am very fortunate that Zane also likes that I am his dad.  I think my own totally lack of sanity, a typicality, and predictability help him feel comfortable as he deals with his own oddities (which we all have).

We communicate...

It’s pretty damn cool!  

He sends me emails of videos he wants me to watch, I send him emails of pictures I think he would like.  We hangout and watch movies when his brother is asleep or with his mother.  Zane has recently started playing bass, he already plays drums at school, has taken piano lessons, and loves to play the ocarina.  The cool thing with him playing bass is that I am teaching him, and we have begun to play my songs together.  This was a dream come true for me.  When Zane was born, I always wanted to play music with him.  In the last month we have done just that! I have been teaching him some of my songs, and we have been jamming together (again in stolen moments when his brother isn’t around or is asleep).  This is super cool for me, because it is an interest of his that I don’t have to take a crash course in.  I believe it is important to keep up with my kids interests.  So I try to learn about the things that Zane likes so we can talk about them.  Honestly, some of the things he likes, just don’t interest me, but I learn about them anyway.  We do happen to read the same books a lot. Sometimes it’s me reading his choices, sometimes him reading my choices.  It’s so cool to have Zane walk into the living room and declare indignantly “How could they leave Tom Bombadil out of the movies!” Meaning he just read the part in the Fellowship of the Ring where the hobbits meet Tom Bombadil.  To which we enter a long conversation how movies, even great ones, can’t replicate books.  The other great thing about Zane, is that often, after he has said something in anger to me, he will come back later and tell me he doesn’t really feel that way, and he was just “pissed off”.  I greatly appreciate him communicating this to me, and I think it shows a lot of maturity.  Certainly I would love for him to have enough self control to never say those things in the first place, but that is asking a lot of a soon to be thirteen year old.  

One of the many reasons that Zane is so mature, is without a doubt, because he has had to grow up with an autistic little brother.  The things that Zane has had to witness, and live through, are honestly more than a child should have to live through.  Unfortunately, children are forced to live through things much worse everyday in countries that are at war.  In Zane’s case, I think the key has been being open and honest with him about the things going on.  To keep a dialog going about why Holden does what he does.  The interesting thing that I have witnessed, is that when other people make comments about Holden or, give Holden a condescending look in public, Zane is always very affected by it.  He often rises to Holden’s defense.  Where as when we are alone at home, Holden is his annoying autistic little brother.  My own brothers were the same way, torment me at home, but if one of their friends got too rough with me, they were quick to come to my rescue.  Almost as if to say, “Hey that’s my punching bag, leave it the hell alone!”  

So we enter this time in a boys life, when they usually start having big confrontations with his father.  It is that chest pounding age where boys try to become men.  They seek the man they know best, and begin to posture.  They push the boundaries and see if their father is man enough to push back.  I think it’s all a big load of crap, and I hope Zane does too.  Cause I would much rather sit back and jam some tunes with him, then have to play some dominance game with him.  Walking around the house metaphorically pissing on everything, marking our respective territory.  Who want’s to do that?  And the clean-up, forget it!

"In Your Eyes"

I was talking to myself the other day, as I often do.  What? You know you talk to yourself too.  Anyway we were thinking (me and myself) that August is a month of quite a bit of significance.  For one thing it is the month in which Zane was born.  He was actually born on August 22nd 2001.  Does that year ring a bell?  Zane was born 20 days before 9/11/2001, a day that will remain significant for all times.  His birth was also a very significant date in my life, it was the day I changed forever from a person, to a parent.  For those of you who have gone through said transformation, it is a significant change.  The other noteworthy part of August is that is marks the return to school for my kids. 

I think parents everywhere can appreciate that summer is a tough time in parent land.  I don’t want this to sound negative, we love our kids after all, but it certainly upsets the routine of the normal flow of life.  Let’s face it, for 9 months of the year our kids are at school.  What we believe about school, and it’s effectiveness is a different story (or perhaps a blog in the future).  So when they are suddenly cut loose for 3 months. . . well it requires some adjusting.  Most kids, whether they believe it or not, like routine.  So when the routine is thrown off, the kids are thrown off.  This is especially true of kids on the spectrum.  For Holden there was the added issue of his therapist having to take time off of work, that coincited with the end of school.  So he went from having school everyday from 8:15am till 2:50pm, then therapy from 3:30pm till 5:15pm, to nothing.  This is one of those huge nothings, like in the cartoons, where it goes from the huge crowd noise, to the sound of a loan cricket.  Holden’s reaction was equally extreme as he attempted to adjust to extreme change.  His meltdowns became more frequent, and more intense.  They also became more aggressive.

On any given day, I tend to wear a few different “Uniforms”.  I am Zane’s dad, Holden’s dad, and Holden’s therapist to name a few.  After all, the whole point of “in home” behavioural therapy is that I learn how to work with Holden in his home environment.  If I can learn the necessary skills to make daily life more connected to the world, then that is one more avenue for Holden to learn from, and grow.  My goal is to get Holden “wired in” to the rest of the world.  I don’t want to change Holden, I want Holden to be able to connect to the other “www”, the world wide world.  Holden has shown us all that he is very intelligent, funny, sweet, loving, and capable, now we just need to get him connected.  I believe if he can learn to express himself outwardly, he can overcome a lot of his “behaviours”.  I think it’s a major bummer that we all can not connect to his universe, I suspect it’s a pretty amazing place.  The few times I have been honored enough to catch a glimpse of that world, I am left in complete awe.  Unfortunately it is not practical for the rest of the world to get “wired in” to Holden. 

So this summer, I have been forced to wear my therapist uniform a lot more.  The temptation is to just hand him his iPad, and leave him to stem over youtube all day, but this not only causes him to DISconnect from the world, it also leads to meltdowns as well.  Like the Romans  of old, he consumes and consumes, until he needs to go barf it all out.  So I work with him, and work with him, and work with him.  Honestly I am bruised, bloodied and exhausted, physically, mentally, emotionally, literally, figuratively, ideologically, and mathematically (just checking if you are paying attention, not really mathematically) from our daily work.  What I can tell you is that Holden’s functional language is up, his eye contact is up, and his expressive language is up.  I like to tease Holden (I should note that I tease him to connect with him, not to be mean), so the other day when he requested a bean and cheese burrito, I asked if he wanted a bean, RICE, and cheese burrito (Holden doesn’t like rice in his burritos), he responded with “No rice” which was a totally normal response for Holden, but he followed it up with “I want bean and cheese burrito, no rice please.” Wow! That is a huge sentence for Holden. There have been similar extended sentences like this from him this summer.  Likewise there have been more times where he spontaneously makes really good, held eye contact.  Those are the great aspects of working with Holden everyday.  There are, of course, trials and rough days (a lot of rough days) and meltdowns that lead to self injurious behaviour, as well as hurting those around him, mainly me.  Like his therapists, I have learned to not take it personally.  That doesn’t mean I don’t lose my patience from time to time, or end up biting Zane’s head off for something that probably didn’t require that response.  It means that after the meltdown is over, I lick my wounds, treat Holden’s, give Holden a big hug, and we go back to work.  We re-engage, and move forward.  I don’t take it personally. 

This is my first blog in way too long.  I think there will be more to come, and more frequently.  I have allowed too many outside variables to affect me, but I hope to not allow that to happen anymore. I created a Facebook page for this blog, you can find it here: https://www.facebook.com/autismandmytwoboys?ref=hl&ref_type=bookmark 

I will always post when I write new blogs here, plus post other things that are hopefully helpful and interesting for parents of children on the spectrum.  Also stuff I am not allowed to post on the nonprofit's page.  Hope you all like it!