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.

IQ vs EQ

Long before John Gray wrote his book “Men are from Mars, Women are from Venus” there has existed a communication gap between the genders.  I will say right up front, that I am no expert on this subject, however, I have a personal take on it, and as you probably have already guessed, it ties into autism.  In Daniel Goleman’s book emotional intelligence, he uses an example of a power lawyer who sustains brain damage in a car accident.  The damage he sustains literally makes him incapable of feeling emotions.  As a result, the man became incapable of making decisions.  It turns out that we use our emotions, as well as our intelligence, to make decisions, no matter how logical a person we might be.  In the example in the Goleman book, the man was asked when he would like to schedule his next doctors appointment.  He was incapable of picking a date, because there were conflicts with each date, so using pure logic, there was no time he could make.  Where a person using intelligence and emotion, could give values to those conflicts.  So the result might be, yes, I have conflicts for each date, but I can’t miss the meeting on this day, and this day is my daughters recital, so this is the least inconvenient time to schedule the appointment.  By using our emotions to prioritise, we can come up with the “lesser of two evils”.  Generally speaking women use more emotions in their decision making process then men.  That does not mean they have less intelligence, just that they weigh emotions heavier in their decision making process then men do.  Reciprocally, men tend to use less emotion, and more logic in their decision making process.  So to create a simple example, when a male is deciding whether they can spend time with their significant other, conflicts in scheduling are going to be harder to over come, then a women who weights emotions heavier.  For him, it is simple, he doesn’t have the time to meet for lunch this week.  For her, it is a matter of prioritizing, making exceptions, and finding a way to make it work.  Not only are they approaching the issue from different perspectives, but they are defining concepts differently.  Meaning impossible to him means something completely different, then it does to her.  We can watch what happens when we remove intelligence from the decision making process, or at least dull the intelligence, and amplify the emotions, by watching people under the influence of alcohol.  The decision making process is once again compromised, this time in favour of emotions, rather then intelligence.  This also clearly demonstrates that women don’t ONLY use emotion in their decision making process, as alcohol affects their decision making process as well.  

Children, again in general, use way more emotion when making a decision, then logic.  Again, it is not that they lack intelligence, but rather that at this point in their development, they are at the mercy of  their emotions.  Unlike the man who couldn’t decide because he couldn’t prioritize with our emotions, children are completely impulsive, wanting to make every decision based on emotion.   Once Zane starts to get upset, you can watch his control on the situation begin to falter.  His emotions take over, and without effort on his part, he loses control of himself.  I have certainly been pushed to the point of anger by Zane, but once I rein in the emotions, I can regain control, and get back to trying to teach, discipline, or explain to Zane what I was trying to explain before losing my temper.  For him, it takes a lot longer to regain that control.  He will be upset for a while, and it will either turn into anger, or self reproach and self pity.  Plus his emotions  magnify geometrically. The more you try to show Zane the error in his way logically, the more he responds emotionally, using sarcasm as his self defence  mechanism.  I don’t think this is odd behavior from a child, Zane just finds very creative ways for nothing to ever be completely his fault.  There by never being accountable completely for his actions.  I should state that he has gotten much better about this, and that these episodes are  becoming fewer and fewer as he matures.  He still has trouble with the accountability issue, but that would seem to be a very human condition.

Holden on the other hand is completely different.  His inability to express emotions conventionally, should never be perceived as a lack of emotions.  He will be seemingly unaffected by most things, then have a very quick out burst of emotion, get very upset very quickly.  Unlike Zane however, if you assist Holden immediately, helping him to express his wants, he will quickly calm down, and express his wants.  The only problem is, if he wants are something that he can not have, he will go right back to being very upset, and potentially melt down.  Once again though, Holden will get over his meltdown very quickly, once it ends. It always amazes me though, how quickly he can get his emotions under control, long enough to be prompted to express what he wants.  He will go from starting to scream and tears flowing, to expressing his wants, if I just say “Holden, what do you want? Use your words.”  With that question and statement, he immediately stops crying and screaming, and will try to express what he wants.  Often he can express it quite clearly, with words.  Other times he may not say the word right, then it becomes a guessing game.  I can usually figure it out, but Zane almost always knows what he is saying.  Zane may not get the big picture of what Holden wants, but he understands the words better then I do.  One day I thought Holden was saying “I want ice cream” to which I said we don’t have any ice cream.  Holden asked again, and I repeated my answer.  Zane, who was working on his homework near by says “Dad, he said he wants to go hiking.” I then ask Holden if he wanted to go hiking, to which he gives an enthusiastic “Yes!”.  The other thing about Holden, is that the more I can prepare him for a situation, the lesser the chance of a melt down.  For instance, on Thursdays I pick up Holden from school, and then go pick up Zane.  I don’t have to pick him up, he has bus service for every day of the week, but I feel the face time with his teacher is important.  Every single time we go get Zane I have to tell Holden “Holden, no ice cream” because there is an ice cream truck that parks outside the school.  If I tell Holden that before we get to the school, he will still ask for it, but when I say “no” he accepts that.  If I don’t tell him in advance, he will have a minor melt down, screaming and kicking for a few yards past the truck.  To me this demonstrates a mind that is more prone to logic, with huge emotional out bursts.  It is a complicated mixture, that is always evolving.  His behaviours create emotional situations, that can often be combated with logic.  Almost the exact opposite of Zane.  I’m sure every parent has to deal with each of their children in different ways, but I really can’t imagine parenting strategies being more different then when parenting one neuro-typical child and one autistic child.  Maybe I need to write a book called neuro-typical children are from Mars, autistic children are from Venus.  Doesn’t have quite the same ring to it, I’ll have to work on the title!

A Night in the Life

Recently a co-worker asked me how I manage to cook dinner, on the days I work.  So I thought I would give a little play by play of a typical night after work.  I usually arrive home at around 6:15pm.  As soon as I walk in the house, usually Zane and or Holden are right there, ready to start vying for my attention.  Zane will start asking me to play a game with him, or tell me about his day, or tell me about the book he is reading, mind you my hands are still full of my things at this point.  Holden will usually just start calling out “Daddy”, and want me to participate in what ever he is doing.  I find out any necessary information from which ever one of the nannies is working, like Holden had a good day, or Holden had bad day, or Zane was being a punk today.  After she leaves, I put my lunch stuff away, wash any dishes from my lunch, and ask Zane what he wants for dinner.  I would ask Holden, but he would proceed to name an item, like “Mac and Cheese”.  
Then I would say, “You want Mac and cheese for dinner?” to which he would reply
“No!”. Then he would name his next thing “Quesadilla!”
“Okay buddy you want a quesadilla?”
“No!”.  This would go on until we cycled back to Mac and Cheese, and continue all night.  Zane and Holden tend to like the same things, the one notable exception is that Zane is not fond of quesadillas, and Holden loves them.  Personally, I don’t know how you can go wrong with melted cheese on a crisp flour tortilla, but to each his own, right?  So Zane will pick something he wants to eat, and this is where the bargaining comes in.  If Zane picks something that requires me to do a lot of cooking and cleaning, I tell him he will need to watch Holden.  Depending on his mood, how much he is craving the desired food, and his willingness to help, he will say okay happily, or he will change his meal wants to something more simple.  As it is well documented by this blog, I have some OCD tendencies too.  I won’t leave the kitchen till every dish is washed.  Whatever Zane picks, he has to suffer the repercussions of that choice.  Usually after dinner, they both go outside and play anyways, and I do the dishes.  While I am doing the dishes, Holden usually starts calling me to “I want push you please”, or “Daddy, come on”.  The first being to push him on the swing, the second means any number of things, from going for a “walk”, to scootering with him.  The other night, Holden decided he wanted to scooter around the block, while I jogged along side him.  He and Zane thought this was great fun, as Zane was also on a scooter.  I, on the other hand, was trying to jog with a full stomach, waiting for the untimely reemergence of my dinner.  After going all the way around once, Holden and Zane decided a second time was in order.  They tried for a third, but I was pretty sure dinner was coming up, if we attempted another pass.  So essentially after dinner the boys get to play until it is time to get ready for bed.  

I have to start getting Holden ready for bed around 7:10pm.  This is not a super strict number, but Holden loves to call audibles at bed time.  Lately he has been really into taking showers, often taking two a day.  So when I am trying to get him ready for bed, he will often decide that he wants to take a shower.  I don’t have a problem with it, I think it mellows him out a bit, and gets him dressed for bed when he gets out.  Which seems to also put him in the mood for sleeping.  However, Holden’s bus picks him up at 6:30am, and they want him out, and ready 5 minutes early.  So I wake Holden at 5:50am.  I feel it’s important he is in bed by 8:00pm.  Before discovering the amazing supplement known as melatonin, which by the way, I intend to marry, and spend the rest of my life in bliss with, bed time was not a fun time.  Holden would fight sleep anywhere from 2 to 4 hours a night.  This made for very long exhausting nights for Zane and me.  I wake up at 3:00am and workout while the boys are asleep, so having Holden take until 11:00pm or later to go to sleep could be very frustrating.  As I said, he has to wake up early himself too, so he needs his sleep.  Thankfully that is resolved.  So at around 7:10 we start getting him ready for bed, which consists of drinking his melatonin in juice, going to the bathroom, and brushing his teeth.  You would think that would only take about 5 minutes, but Holden always finds a way to stretch that out.  This is the point in the night where he might decide he wants to take a shower.  He may get all the way in bed, and decide he needs to go to the bathroom again, even though he just did 5 minutes earlier.  So I humour him for a while, but always gently nudging him towards the bed room.  When he finally gets in bed, we put on a video, and sleep usually ensues.  Of course, picking a video often turns into a battle between Zane and Holden, usually with Holden prevailing.  I have to admit though, I think the only person that can actually change Holden’s mind about anything, is Zane.

Brothers

Holden loves his big brother!  For his part, Zane can be very mean to his little brother.  Sometimes I think I am a little over protective of Holden for two reasons.  The first one is obvious, he has a disability.  However, I grew up in a home with all neuro-typical kids, and I was the little brother, and there were times when my brothers could be very cruel to me.  I don’t think they appreciated the potential damage they did to their little brother, physically and emotionally.  There is no question that Zane doesn't understand Holden’s autism completely, and can get annoyed with him, for a multitude of reasons.  He often complains that he wished Holden were a “normal” little brother.  I think if Holden were a neuro-typical little brother, that Zane would spend a lot more time in trouble then he already does.  Neuro-typical or not, big brothers seem to think that little brothers exist to annoy them, and that they are their personal toys to torture as they feel fit.  They always feel that the little brother is more loved then they are, and that the little brother is more spoiled then they are.  Holden has very simple needs, and there is no way that Holden is more spoiled then Zane.  Zane was also the only child for 4 years, and I can assure you my financial situation was much better at that point and time, and Zane reaped the benefits of that.  

Now I have been brutally honest in this blog, and I can tell you, I was a much more annoying little brother then Holden is.  I would go out of my way to antagonize my brothers, to make up for the abuse they put me through (One of my brothers played football, and the other wrestled, and they are 4 and 5 years older then me.  I was their favorite practice dummie).  I had no problem running and hiding behind my mom's skirt, when I pushed to far.  The fact is, there were plenty of times when mom wasn’t around and they took full advantage of her absence.  Growing up I was NOT a morning person, and my brothers found it great sport to push my buttons as often as possible in the anti meridian hours of the day.  We had some pretty brutal fights as kids, that led to broken walls, doors, wooden spoons, and occasionally bones.  Almost every major injury I sustained as a child, was at the hands of one of my brothers.  Whether on accident or on purpose, I can attribute two broken bones (One of which was a broken arm requiring setting, WITHOUT anaesthesia.  Please take my word for it,  you do not want a bone set without anaesthesia, I was 10 years old at the time), 16 stitches, several yellow jacket bites, and a fear of closed places, to my brothers.  Of course, they sustained their fair share of injuries too.  My older brother broke his own hand miss hitting me once.  We were on a first name basis with the Emergency Room staff at Goleta Valley Hospital.  Yet through it all, we could be very protective of one another.  Jumping to the defence of the same sibling that just stuck our head through a wall the day before.

I am beginning to see that protectiveness in Zane.  I related a news story I was reading the other night, about an eleven year old autistic child that was punched, kicked and choked while screaming for mercy, by a bus driver and assistant.  Zane became very upset, and had some rather unkind words, and suggestions for the bus driver and assistant.  In retrospect, I probably shouldn’t have even mentioned the whole thing to Zane, but I expressed my own shock out loud when I read the article, and he asked what it was.  I completely agree with some of Zane’s suggestions for the two people, and had a few of my own, however, being a parent, I expressed that it was the job of the legal system to find fit punishment for them.  In reality there probably isn’t a “fit” punishment, but that is another subject.  I think Zane was so affected, as was I, because of Holden.  Certainly neither of us would condone that, even if we didn’t have Holden in our lives.  The fact is, I put Holden on a bus every morning, and Zane often watches me.  Like myself, he could very easily see the same thing happening to our Holden, and Holden not having a voice to defend himself.  

Despite Zane’s ability to be mean to his brother, I think when in need, Zane will have Holden’s back.  I hope as Zane matures, and as Holden progresses, that they become closer.  That they learn to enjoy each others company.  At the very least, I hope they are as fiercely protective of each other, as my brothers and I were growing up!

What's the Plan Stan? (part 2) AKA The Twilight Zone

So I feel the need to clarify, since my last post lacked an essential element of the whole IEP process.  In truth I suspect this will be a topic revisited again and again.  However, the main thing I forgot to mention is that Holden’s  teacher can not recommend services.  So, (in my best Rod Serling voice) imagine if  you will, that you go to the doctor.  It’s annual check up time, and you get to be poked, prodded, and wear a gown that no matter what you do, your derriere, is in the air.  Your doctor checks you out, takes your pulse, blood pressure, temperature, etc.  Then you put your close back on, walk into a room, where there are other doctors, and your insurance agent all sitting at a table, along with your doctor.  The insurance agents asks you if you feel there is anything that requires attention.  You look at your own doctor who simply smiles back at you, and says nothing.  You state that you have some concerns about your cholesterol levels. The insurance agent asks the person representing the lab if there are any concerns about your cholesterol,  the tech looks at your blood work up, and replies that your cholesterol is elevated since your last physical, but still at a good level for your age.  Concerned that your cholesterol has elevated despite your good diet and exercise, you ask your doctor why that is, and if you should be concerned.  Before your doctor can answer your insurance agent tells you that elevated cholesterol can occur for a multitude of reasons, but that since you are within a safe zone for your age, it is nothing to be concerned about.  Not satisfied, you ask your doctor if there are other tests that should be done.  Your doctor tells you that perhaps a more intense work up wouldn’t be a bad idea, and suggest that the lab do a more thorough work up for thyroid and anything else that can be affecting the cholesterol level.  Once again your agent jumps in, saying that extra blood work for your cholesterol is okay, but a complete work up is superfluous since in two years you turn 40 and will be receiving a complete work up.  This is not the Twilight Zone, this is the reality of the IEP.  Okay, perhaps this is a bit of a dramatic representation, but I think most of us want our doctor to be able to suggest solutions to things they find, even if it is not the concern you came in with.

It’s like taking your car to a mechanic, and getting a 35,000 mile service.  The tech looks over the car, finds that your brakes are metal to metal, but they aren’t allowed to tell you, because you did not request your brakes get serviced.  If I don’t request that Holden be assessed for a specific service, and as I stated in the last post, have a good reason for him to receive that assessment, he won’t be assessed for it.  Not because the teacher doesn’t think he may benefit from it, but because the school would rather not have to pay for it.  So if I want my son’s teacher to have all the tools she can get, in order to teach my son as best as possible, I have to make sure I know what the hell I am talking about when I walk into that IEP.  So once again, knowledge it the key.  Knowing what to ask for, why to ask for it, and how to ask for it.  This opportunity only happens once a year, and in terms of assessment, only once every three years for his triennial.  He can certainly get services added at other times, but it is much more difficult then at the IEP time, and getting assessments at anytime other then his triennial is very difficult.  So poor Holden is being assessed till his little but is going to fall off.   I know it’s for the best, and besides, as the video below will show, Holden knows how to relax after a hard day of assessments!