"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!