I am doing something different for this blog. I am starting it, with no idea what I am going to write about. In reality, it doesn't really matter, because I begin each blog with an idea of what I am going to write about, but just like writing fiction, I soon find my fingers have taken over. Of course the best things in life happen this way, organically. We can’t force our will on the world and expect it to succumb to our wishes. Sometimes though, life sends us such a treat, a little nugget of perfection, that we didn't anticipate or expect, and it is so awesome. The key to it, is being open to it, allowing it to enter our soul, and speak to us. If we are too stuck on our path to notice the beautiful flowers on the side, how are we going to notice when a side trail turns up, and has great things to offer us. Certainly there is something to planning, and the old saying failing to plan, is planning to fail, has some truth to it, but we also need to be open to the unforeseen. Sometimes those things are what are meant to be.
This is the best approach to take with Holden, because there is no anticipating every possible contingency. There are days where I am sure he is so happy, and perfectly in sync, that I could throw anything at him, and he would be flexible. Of course these are the days I end up frustrated and baffled, and Holden ends up melting down. What I have begun to realize though is it’s not just about trying to anticipate every possible thing that could come up, it’s also about seizing those moments that come up, and can become part of the plan. The complete unpredictability of Holden is what makes him predictable. By accepting this idea, it becomes so much easier to work with him. It’s about responding to him, and not reacting to him. It’s about listening to him, and not telling him what to do. It’s about watching his cues, and learning to anticipate when we are veering off course, and when we are simply stopping to appreciate the flowers on the side of the path. To let him chose the path that goes off the main path, because in the end it leads to the same place, just with a little change of scenery. Certainly there are times when the path leads to danger, and then it’s time to reason with him, and show him why that path is a bad choice, and show him the alternative paths that are open to him. Let him choose the alternative that best suits him.
Of course this approach to Holden also works on Zane, with even better results, because it teaches him that his choices have repercussions. How can we expect our children to learn to be responsible, if we never give them choices, and they don’t understand the responsibility in having those choices. “With great power, comes great responsibility”, what greater power in life is there than choices. Our life is what it is, because of the choices we make. Each choice we have, is an opportunity to better ourselves, or make life worse. To show our moral fabric, or lack of it. To be the person we want to be, or take the easy path. To practice what we preach, or be a hypocrite. That is what I want Zane to understand, not to mirror my beliefs, morals, and ideals, but to understand that he is defining his own by making the choices he makes.
As an adult, I make choices everyday that have repercussions on not only myself, but my boys and countless others. I don’t always make the right choice, especially when it comes to the boys, but that is called being human. I would rather make choices that turn out to be mistakes, than not make choices at all.
It has been my experience that most kids have a few favorite times of year, certainly Christmas is high on the list, Halloween, their birthday, and of course summer vacation. Certainly there are other dates and times that are special to kids, but these are some of the most loved times. I think looking back on childhood, a lot of us would also consider these to be significant times in our lives.
Holden is one of those rare kids, that does not do well over summer. It’s not so much that he doesn’t like summer, as much as he struggles when he is out of school. He loses a lot of the structure he so craves, and finds himself wanting for stimulation: sensory, emotional, and intellectual.
In preparation for this years summer break, we, of course, enrolled Holden in extended school year (summer school in other words) like we do every year, but that is almost three hours shorter than the regular school day. I also enrolled him in a special summer camp, that had one on ones available to a limited number of developmentally disabled kids. I was able to put Holden in three weeks of this camp. I thought this would really help him have some of the structure he wasn’t getting as a result of being out of school. Unfortunately it did not fulfill his needs, and it became something that he only wanted to participate in certain aspects of. It was often difficult to get him to go, and I had to stay with him sometimes for over an hour, before he was ready for me to leave. It was a good experiment, that unfortunately turned out to be the wrong idea.
For the rest of summer, I dedicated myself to giving Holden all the stimulation he required. I was in the proverbial catch 22. I could leave him to his own devices, and become very frustrated and exhausted trying to keep him out of trouble. Or I could dedicate myself to giving him the stimulation he needed to keep him out of trouble. This too was exhausting, and sometimes frustrating, but the difference was a happy Holden. There is no question that Holden happy, and not anxious, and not getting into trouble every second, was much preferable to the alternative. I just had to drop off the face of the earth for a while. Even though I was exhausted and sometimes frustrated, it was so great not to be fighting with Holden, having power struggles with him, or literally putting out fires, floods, and mayhem.
I think next year I will try to find another summer camp, to take up a few of the weeks of no school. This time I will be searching for much different parameters than what I found this year. I also will take on the task of being there for him the rest of the time, and create the environment that I now know helps him so much. There is no question that Holden had his best summer ever. There is no question that his transition to school has been way smoother. He has already had to deal with two different bus drivers, and a camera on the bus now, that sometimes works (red light on) and sometimes doesn’t, and he has handled these things much better than I would have thought.
So I will not make excuses for myself, for having not written a blog in way too long, but I will take shelter in the thought that I succeeded in helping Holden have his best summer since being in school.
In times of war, victories always come at a great cost. Loss of life, loss of property, and sometimes the loss of a way of life. The civil war was an extreme example of this, as every single casualty was an American. Every victory was bittersweet, as fathers fought sons, and relatives of every other kind were forced to take up arms against each other. So many victories were empty victories, that were necessary to keep the country united. Even Sherman’s march to the sea, that killed the least amount of people, still completely devastated a way of life, and broke down the south’s infrastructure so much it took decades to recover. None the less, it was a necessary change, the world could not continue doing things the way they were. The status quo was broken.
In many ways, having an autistic child is about fighting wars, that have bittersweet victories. There are all of these strategic moves that need to be made in order to achieve the support that our children require. It is an emotionally devastating process. One example is evaluations.
When our children are evaluated, we actually want them to perform poorly. I have heard of parents not feeding their children breakfast before an evaluation, so they perform especially poorly. I myself have smiled internally during an evaluation when Holden does show his true colors. Because we as parents are trying to convince the school, the county, the state, that our children need help beyond the norm. With the government trying to tighten its wallet any way it can, stricter guidelines for these services are enforced. At the same time, when we receive these evaluations after the fact, and we read how poorly our child did, it is a very empty victory. At the time of the evaluation we are elated that our children showed the need for help, but when it is written in a report, and expressed in such detail, it is sickening and depressing to read. It’s hard enough watching the neighbors child, who is two years younger then our child, be able to outperform our child in every social way possible. To read it in print, in a sterile voice, that is apathetic to our beautiful children, that we know to be so much more than they appear, is like a punch to the solar plexus.
I recently had one of these empty victories. Holden’s original diagnosis was made when he was four years old. The verbiage used was such that with the new tougher guidelines for services, I felt could potentially harm him. Anyone evaluating him now would certainly not debate his disability, but the diagnosis itself was suspect. Since we had moved and were under a new regional center, I asked that Holden’s case be looked at again, from the diagnostic standpoint. The regional center agreed, and made an addendum to his diagnosis that made his need for support much more clear. Certainly I am happy to have that security for his benefit, but it just further exemplifies his deficits. It is so very hard to feel any joy in this victory. Was it necessary? Yes! Do I enjoy reading it? NOT ONE BIT!
They say cleanliness is next to godliness, and I tend to agree to a degree. For instance I believe in taking a shower everyday, but I have been known to not shave everyday (uh, sometimes more like every week). Likewise I never wear dirty clothes, however I tend to keep clothes long past retirement age. I think hygiene is important, and despite often looking ragged, I rarely smell ragged. Even when I was touring full time, I would always find time to take a shower everyday. I have even been known to take a shower on the bus, while driving down the highway. I strongly encourage people not to try this, as it is both dangerous, and not a very satisfying shower, but well worth it after a long day of sweating under the lights. I should state I toured full time in the time of high powered incandescent lights, the new (not that new anymore) LED lights are so nice, and let off almost no heat. Well as you can probably guess this is leading up to something.
Holden has recently become quite obsessed with doing laundry. The thing is, he often doesn’t want to wait for dirty laundry to be generated, and will start pulling his clean laundry out of his drawers and fill the laundry basket. He often bipasses the washing stage, and tries to put them straight in the dryer. To even further complicate things, he wants to put laundry detergent on the clothes he is putting in the dryer. He also obsessively cleans the lint trap several times per load, often trying to stop the dryer to check the lint trap again and again. This has become a daily battle for us. I never let Holden out of my sight for very long, and to me very long is around 90 seconds. That is the maximum I will let him out of my sight for. Believe me, in 90 seconds Holden can fill a laundry basket in the bedroom, and drag it down the hall, through the kitchen, and into the laundry room. I try to never let him get this far, because he is past the point of no return in his mind, and a major meltdown will ensue when I stop him from putting them in the dryer. Most days I catch him when he starts pulling out clean clothes, and immediately try to redirect him to doing actual laundry. With there being three of us, and me working out at least once a day, and often twice a day, there is usually laundry to do. So I have to redirect him to the actual laundry. It’s not like he just gives up on his clean laundry, because I tell him there is actual laundry to do, it is much easier to just grab some clothes that is all folded up, and toss them in the basket, than to go round up the laundry. In the end he usually accepts this, and we start in one room, and go room to room emptying all the baskets into one. As I said, we are three guys, there is no separate loads in our house, laundry is laundry. So what if my socks have a slightly blue tint to them from being washed with jeans, chances are they are also being washed with legos, sand box sand, rocks, and whatever else the boys have left in their pockets. I try to drag this out as long as possible, with the hope that he gets distracted along the way. Once we get to the laundry room, I put the clothes in the washer, pour out detergent, and let Holden dump it into the machine, and push start. At this point he tries to go back to the bedroom, and start grabbing clean clothes again, cause he knows there is still nothing in the dryer.
Needless to say, this increases our water bill, electric bill, and is somewhat wasteful, being that they are not always completely full loads. This is just one of the many ways that having an autistic child can increase your expenses. He also likes to change out the trash and recycling bags before they are full, hell usually before they are even half full. No one will ever accuse Holden of being unclean, or lazy, that is for sure. As a friend of mine put it the other day, he is quite industrious.
Something that has always plagued Holden is that he gets sick a lot. I don’t want to jinx this, but ever since we have been in Santa Barbara, he has been sick less. However, either way, he tends to catch more than his fair share of colds. I believe one of the reasons is that Holden still sticks things in his mouth, including his fingers. It is one of those things that most kids grow out of, but for some reason Holden’s disability has made him cling to this for longer than most kids. The logical answer is probably sensory. Our mouths are incredibly sensitive to a lot of sensory information. In fact as I write this, Holden is fighting a cold, nothing serious, just the sniffles, but a cold none the less. There is nothing particularly interesting about this fact, except for one thing.
Zane has managed to have another perfect year in terms of attendance. This is the second time in a row that Zane has managed this feat, something that his teachers haven’t even accomplished. This achievement in itself is quite a great one, but couple it with the fact that his brother is a walking cesspool of germs, it makes the achievement all the greater. I would love to attribute his great immune system to the fact that he was breast fed, and breastfed for longer than most kids are these days, however so was Holden. I have to take a second and say that I think that breastfeeding is a natural and beautiful act between a mother and her child, and that there is no place that this necessary act is inappropriate. It truly amazes me that people get so bent out of shape over such a natural act. What’s next, having to clothe our pets in public? Okay, I digress.
I should state for the record that Zane indeed does get sick. He does not have any super power, like being unbreakable or anything. He just doesn’t get sick often, and usually doesn’t get very sick. Once again, I hope I am not jinxing myself in stating this. To his credit, Holden tends to power through most common colds too, but he does have a tendency to get some nasty bugs as well. In fact about the only time Holden is still, is when he is sick. It makes it all the more obvious that he is not feeling well. I have watched him sleep for 18 hours in a day, only waking to be sick before.
Ironically, Zane was the one who required surgery for Pyloric Stenosis at the age of 6 weeks. I can tell you, having a baby have to have surgery, is about the worst experience a parent can have. Having your first baby have to have a surgery, really tests new parents. It was a horrible experience that probably deserves a whole blog dedicated to it, but suffice to say, I don’t recommend it to anyone. Ever since he came home from the hospital from that surgery though, Zane has been one healthy kid. I believe in rewarding achievements like that, and I have rewarded Zane both times he accomplished his perfect attendance. He usually does pretty good with his grades too, so the end of the school year has typically been hard on the pocketbook, but well worth it. Now if I can get him to clean his room, and not talk back, I could retire as a successful parent. . . I guess I won’t be retiring anytime soon.
For the first time in over two years I am touring. It is just a short tour, 5 shows over the Memorial Day weekend. Still it is very significant. A year ago I didn't think this would ever be possible again. It took a few things to have transpired for it to be possible for me. The biggest one, is Zane and Holden’s mother moving back to California, and especially Santa Barbara. It would not have been possible for me to tour had she still lived out of state. Of course, having Toad still want me to tour with them was certainly a necessity. As I have stated on this blog before working for Toad was the best job I ever had, not because of the bright lights and big cities, but because I was appreciated, respected, and given a lot of freedom to be creative in my work. That means a lot to me, and most employees.
So as I was working my first show on the trip, it dawned on me that this job had help prepare me for being Holden’s father. There are a lot of stressful jobs in the world, a wall street broker, Bering Sea crab fishing, and many others. There are few jobs though, that require you to work in front of an audience. Back in the nineties it wasn’t unusual for us to do shows for over 20,000 people. When you headline a show for 20,000 people, and you have to do the changeover, after the opening band plays, you are working in front of 20,000 people. They are actively watching you, because they know that when you are done, they get to see what they paid good money to see, which was not me setting up gear. When something would fail on stage the whole show would come to a stop, while I tried to figure out what went wrong, and how best to fix it. To add to the stress, the person who’s gear failed is equally stressed because their gear isn’t working, and they are holding up the show. One would think that it’s the ability to not care what people think of you, that would make working such a job tolerable, but in actuality, for me it was being able to focus on the job completely. To become so immersed in what I was doing, that I didn’t even take in the fact that I was working in front of people.
As a parent, we have to be that focused on our children. As the parent of an autistic child, we have to be even more focused. It’s not that we learn to negate all the background “noise”, but rather that we bring our focus up on the foreground so much, that the rest becomes so background, it all but disappears. As a parent of a special needs child, we cannot allow our attention to drift at all. The stakes are just too high.
I don’t know if I am just naturally the type of person that can focus in on one thing, while still being aware of my surroundings, or if working as a roadie, developed those skills for me, but either way, it helped prepare me for what I never knew was coming. Now looking back on all that I have done in life, not much else could have better prepared me for the journey I would take in life, when Holden was born. So having the opportunity to do this job again, has really helped show me the light. I can now add that it taught me to be a better parent, to remain calm in bad situations, and to learn to deal with the situation at hand as best, and as efficiently as possible. To adapt to the ever changing stages, lights, temperatures, and cities that go along with tour, just like I need to adapt to the ever changing entity that is Holden.
Last but not least, two things have become very apparent to me on this tour: 1) I am not as young as I used to be. I was discussing this with one of the other crew guys, and as he so wisely pointed out, it’s the recovery time that gets elongated by age. 2) I miss my boys SOOOOOOO much!
There are these moments in life, where everything seems to shift. Sometimes they are gradual shifts, over time, and sometimes they are violent shifts that happen in a moment. Failed marriages are usually gradual shifts over time. Where things were fine in the beginning, than at some undefined moment in life, they started to not be fine. In the beginning it seems like all the problems are situational, and things will get better as the situations improve, but they never do. What starts as a few bad moments, in an otherwise fine relationship, becomes few good moments, in an otherwise bad relationship. Once the communication fails, it spirals out of control, like a jet in a flat spin. Violent shifts can be things like a death in the family, or a severe injury that leaves you paralyzed, or maybe something good like winning the lottery, or graduating college. For the most part life is full of varying forms of gradual and violent shifts. Often, there can be several gradual shifts that are unrelated, but result in a much bigger shift. Certainly these shifts can be positive or negative.
I became aware of a major shift in my life recently. I was talking to a former co-worker, and he was telling me about how bad of a month my old workplace had. I need to explain that I worked as a back counter parts tech at a Toyota Dealership. In that position we were paid 100% commision. You can imagine how the economy, and the scare that Toyota’s were defective and accelerated on their own (in fact, the NTSB cleared Toyota of every case, siting user error, derived from black box information. Yes, new cars have a black box, like an airplane, it’s built into the main engine computer) impacted our paychecks. On top of that, we all received pay cuts. So my ex-coworker was relating that they had just had one of the worst months since he started working there. The frustrating part about these months, is that we were so understaffed, that even on these horrible months, you quite often still worked your butt off. As I was empathizing with him, I realized just how fortunate I am to be out of that situation. I jokingly told him that he should move to Santa Barbara also, to which he replied, not all of us are able to up and move like I did, leave everything behind, and make it work. I expressed that I was indeed very fortunate. He then said “So no more unhappy Jonas?” to which I could only truthfully answer one answer, “Nope”.
The shift has been very gradual, and hard to notice, since it is a positive shift. I don’t know why we notice negative things so much easier than we notice positive, it should be the other way around, but I guess that is human nature. None the less, it has shifted, and “unhappy Jonas” is gone. I miss some of my friends, two in particular, a Koalaphant, and the other half of “Messenger”, but all in all life has gradually improved a lot. Certainly Holden hasn’t miraculously been cured of autism, and Zane hasn’t suddenly decided he loves school, and can’t wait to go everyday, but these are facts of life that I accept. Nothing in life is idyllic, that’s only in the movies. As is often the case, our perspective on events makes a huge difference too. We can choose to perceive everything in a positive or negative light. It is always easier to view things as positive, when life is positive. So as I empathize for my ex-coworker for the negative that he will have to endure, in a workplace that is at best hostile, I thank him for reminding me that there was an “Unhappy Jonas” and that he is all but a memory. For a few hours today I was about as giddy as I get, I blamed it on the Monster I had just drank, but I know the truth. The truth is I was thinking that I don’t miss “Unhappy Jonas” one bit, and I love being just Jonas again.
As today, Holden’s seventh birthday, comes to an end, I can’t help looking back at his last year. Normally I would write something about how much having Holden in my life has changed my life so much, and for the better. It is very true that Holden has changed my life so much, and I can not even express how much it has changed it for the better. However, I am going to put myself aside, for once, and reflect upon Holden’s year.
This year has been a year of great advancement for Holden, and tough changes. It has been a year of up and downs, and lots of new people in his life. It has been a year of increased family presence, in the form of his grandfather and step grandmother, his uncle, his grandmother, and most of all his mother. All these people had been in his life before, but now they are in his life as much as on a daily basis. They all make him so happy, and he loves having them more present in his life. He has a “one on one” aid at his school that he loves, and therapists who enjoy working with him, despite his occasionally challenging behaviours.
I am not going to dwell on the tough times this year for him, they are all well documented in the blogs that precede this one. So lets talk about some of his accomplishments. Holden participated in the Special Olympics School Games last week. He won a silver medal and two bronze medals. I have to say that the whole experience was great for him, and I loved watching him. I didn’t expect to be so affected by him marching in during the opening ceremonies, holding the banner for his school with three other kids. It was a very emotional moment for me.
Scholastically Holden has been doing so amazing. Everything has just been progressing so well, especially with his reading and writing. He continues to show great intelligence, creativity and artistic ability. Now he is also beginning to empathize with people. Understand their emotional states, and comment on them occasionally. This is such a huge step in his development. He is getting more inclusion time with kids in general first grade, and I believe this inclusion time with continue to grow, and hopefully some day replace his special day class.
Just earlier this week, Holden was playing with sidewalk chalk, and he wrote “Holden’s House” on the house. I was so happy to see him write that. Zane was born in Santa Barbara, and has always felt close ties to it, Holden was born in Escondido, and it was the only home he ever knew. He often asked for it, and still does, to a much lesser degree. For him to write Holden’s home on his new home in Santa Barbara was a really great step in his life. I believe he has really come to accept this as his home, not just the house, but the city as well. We now have our spots we like to go too, and he knows all the places he likes, when we are driving around. Holden has always loved the beach, and here he is so much closer to it.
As I watched Holden patiently wait for us all to sing him happy birthday, I truly got a sense of how far Holden has come. He knew the lyrics to the song, sang it with us, then blew out his candle. It seemed like such a simple and natural thing to observe, and yet I believe it was the first time Holden understood what it all meant, and why it was happening. It’s always hard to watch our children grow up, and need us less and less. It is a bittersweet part of being a parent. In Holden’s case it is an especially difficult thing to watch, because he was so dependent upon us. When we go for walks, and he doesn’t want to hold my hand anymore, and I can actually let him walk on his own. I can’t help feel a huge surge of pride in him, and a gaping hole in my soul open up. For Holden each milestone of independence he achieves, is another huge step in his war against his disability, a war that has no end, but now we see a lot more victorious battles, than losing ones.
note: this title is the Beatles “Birthday” song, just in case there was any confusion.
The other day, Holden was having a particularly bad melt down in the front yard. After probably 10 to 15 minutes of him melting down, my neighbor came over and offered to set up his kids’ bouncer on the front of our lawn. His kids were out for the day, and he was offering it solely for Holden’s use. I thanked him, but told him no thank you, because 1) Holden would be getting rewarded for a melt down and 2) Holden would then want to use the bouncer again, when it was not available. The neighbor understood, then proceeded to offer to help anytime I needed help. In a very non judgemental way, he expressed that it must be very difficult to deal with Holden, and that if I ever needed a break, I should just come over and ask. It was very sincere, and very generous of him. I thanked him, and he went back to his house, while Holden continued to melt down on the front lawn. As he walked away I reflected on the fact that I was not stressed or anxious at Holden’s melt down. Several times during the conversation with my neighbor, he kept saying “I don’t know how you do it”, and “it must be so difficult” to which I replied that “I was just part of the gig”. I realized that day, that I had reached a point of acceptance where it was indeed just part of the gig. A melt down in public like that one, a few years ago, would have left me a wreck. Now it was just another day in the life of Holden. It wasn’t always pretty, but it was, what it was.
As my neighbor kept going on about the difficulty of it all, I realized it was all acceptable to me, because I love him so much. I began to reflect on this love, and it dawned on me, it is because of the difficulty that I love him so much. I don’t have super powers, or extra patience, or thick skin, I have a much greater power working on my behalf, I have love. Pure, unconditional love. I love both of my children so very much, but the love I have for Holden is different, because it has to be. Like all parents who have children that are “more difficult” than other children, we love those children in the way we need to, in order to meet the challenges their lives create. Whether it is an asthmatic child that can literally die because of the right mixture of events in their life, or a child with progeria, who will probably not live to see their sixteenth birthday, or a very sensitive child that is greatly affected by a great many things, or an autistic child melting down on the front lawn, we as parents learn to love them as we need to, in order to do the job we have as parents, and meet the challenges presented to us. Are there times when we are spread so thin, and our patients so spent that we truly need a break, yes. However, that need is less often than we think. Like the Navy SEALS who learn that they can push their bodies and minds much further than they ever believed, we parents can do the same thing. Do I wish Holden was not autistic, and could lead a “normal” life, hell yes, but for his sake, not mine. Because I would never be aware of how incredible a power love is, if I had not been challenged by the issues created from Holden’s condition. I would not have had the strength to make the move back to Santa Barbara, I would not have had the courage to start my own business, and I would not have had the fortitude to function on two or three hours sleep for days at a time. Even when Holden is melting down, and fighting my every attempt to redirect him, and calm him down, I feel nothing but pure love for him. I feel bad that he has become stuck on something that I can not let him do, or is impossible. I wish I could change the world for him, but I can’t. Most of all, I have become a better person, because I don’t think about myself anymore, while he is struggling to communicate, and ease his own anxiety.
I once attended a lecture by a guest musician at San Francisco State University, while I was a student in the music program. He made such an amazing observation, that stuck with me for life. I applied it to my acting as well, when I went to Cal Arts for Grad school. He said if you are getting nervous on stage, it is because you are thinking about yourself and not the music. That your attention should be so focused on the performance at hand, that you shouldn’t have a moment to think about your own wants and needs. Similarly, I had an acting teacher have us write down on separate pieces of paper, everything we didn’t like about ourselves, personally, as an actor, and any other possible way. We then made boxes for these slips of papers, and everyday we came to class, took the boxes down from a shelf, and stuck them outside, for the hour and a half we were in class. In essence we left our bull shit outside. Holden has taught me how to do this in life, how to not fixate on myself while dealing with him. There is plenty to deal with, without including myself in the equation. Now I wish I could take that knowledge and apply it to the rest of my life. Unfortunately I have not mastered that in the slightest. I am apparently only my best, when I am being my boys parent, and I have love to thank for that.
It has always interested me how we as people can change so much, just by changing the people we are around, or the situation we are put in. For instance there is the way a lot of us tend to digress around family. We can work so hard on changing who we are, and overcoming our shortcomings, but then we get around family, and we find ourselves transported back to childhood. There are other people we get around, and we just seem to always have a great time with them, even if we are just doing laundry. The same thing can apply to situations and places. How we are at work, may be totally different then how we are at home. When I was going through the acting program at SBCC and later in grad school at Cal Arts, I had to become a caricature myself, to overcome my own shyness and phobias about being around a lot of people. Holidays can also be events that allow us to be someone else, in the case of Halloween, we are literally allowed to be someone else. At Thanksgiving we reflect on all the things we have to be thankful for, and enjoy family. Christmas is a time of giving and spreading cheer. All of these holidays, and all the other holidays mean something different to all of us, and when we shift into that “mood” also depends on the person. I’m sure we have all heard people say “I am just not in the Christmas Spirit this year”. Like people and places, these holidays can shift our personalities, and alter our perception of life. Some of the alterations can be for the better, but some can be for the worst. Certainly for those who lost people close to them, the holidays can be a cruel reminder of those losses.
For Holden, the issues are, as is typical with him, different. Holden doesn’t understand why these holidays are only at specific times. The other day he wanted to go trick or treating, in the middle of March. I explained to him it wasn’t time for trick or treating, and showed him on the calendar where Halloween is on the calendar. He has learned about the days of the week, months and time in general at school, but I think it remains a fairly abstract concept to him. He often asks for “Ten more minutes” when it is time for him to end an activity, or go to bed. His sense of time in terms of ten minutes is actually pretty accurate, but judging days, weeks or months is, I think, very hard for him to perceive. He has asked for presents, when he sees a box in a closet, because he knows that at some abstract time of the year he is given lots of presents in boxes. He also gets taught about these holidays at school, and often comes home with art that represents these holidays, like decorated eggs for Easter.
Typically what happens though, is that he wants to continue the activity all year around. After decorating hard boiled eggs yesterday, he will want to decorate eggs every time we make hard boiled eggs, which is one of his favorite foods. He loves to peel his own egg and eat it. I always make him an extra egg just for him, when I boil eggs for egg salad. So it confuses him to have hard boiled eggs he can’t eat right away. Likewise he doesn't understand why he can’t go trick or treating all year around, why there are no presents for him all year around, why he doesn’t get sung happy birthday to him everyday, and why he doesn’t get to go to school for weeks at a time.
There is a part of me that thinks he is right. Why do we only reserve special days for certain activities. Shouldn’t we be giving all year around, shouldn’t we be thankful all year around, shouldn’t we be allowed to walk around dressed up like a pirate, because we feel like a pirate today. Like Ebenezer Scrooge, who proclaims “I will honor Christmas in my heart, and try to keep it all the year. I will live in the Past, the Present, and the Future. The Spirits of all Three shall strive within me.” So I will help Holden celebrate his 364 unbirthdays, and allow him to dress in a dress if he feels like it. I don’t think I can allow him to go trick or treating in March, but I don’t think I will over celebrate holidays, but rather allow him to “Keep [the holidays] all the year, [and] live in the past, the present, and the future.” So happy Easter to all of those that celebrate it, but don’t be surprised if you are on my street if you see Holden dressed up as Sponge Bob this Easter, or if he rings your doorbell and yells “Trick or Treat”. He loves like it is Christmas every day, so the hell if I am going to stop him enjoying the rest of the holidays all year around.
J.S. Bach wrote an amazing piece of music called “Musical Offering” that was an offering to Fredrick the Great. It is really a master work on the Canon. There are several ways to manipulate the melody of a canon, and in the “Musical Offering” he does them all. I wanted to really dissect this piece of music, to be able to truly demonstrate to the non-musician just how complicated this beautiful piece of work is, but the more I researched it, the more I realized there is just too much complexity in it, to explain it in simple terms. There are two ways I can think of to describe the complexity of what he does. Here is the first one: A canon, reduced to its most simplest terms, is like a round, like “Row Row Row Your Boat”. Now imagine a native american woven rug. If we look at “Row Row Row Your Boat” as a rug that has a pattern, that then repeats itself over lapping the original pattern, and weaves in, in an appealing manner. Perhaps we use the single pattern repeated in three different shades of a color, so that they interweave in a visually appealing way. Now imagine taking a pattern, and weaving it in three or four patterns that are now also different colors, not just shades of the same color, while still not making it clash anywhere. Now lets take the pattern and have the second pattern repeat itself twice as fast as the primary pattern, while still maintaining visual beauty. Now take the pattern and flip it, where you had the pattern go down, now it goes up, and vice versa. while still weaving into the original pattern as well. Now take the original pattern and weave in the mirror image of itself. In the “musical Offering” bach weaves ten of the most intricate rugs you have ever seen, including one that can literally rise endlessly, well beyond the means of an instrument to play. In the margins of this piece Bach writes “As the keys ascend, so do the glory of the king”. Also there are two movements of the “Musical Offering” that don’t state the duration of repetition, but rather instruct the performers to discover it “By seeking, you will discover”. This piece of music is so complicated, yet is at the same time rooted in its primary melody, that repeats over and over again throughout the piece. It is a beautiful, and eerie melody that is innocent, beautiful and melancholy all at the same time. In truth I don’t think this rug metaphor completely does justice to how complicated and difficult this piece was to compose.
What the “Musical Offering” is, is an amazing metaphor for two people. Actually it is probably a beautiful metaphor for a lot of people, but I am going to focus on two. One, my readers will be very familiar with, Holden. The other will be less familiar to my readers, but very familiar to Priscilla Gilman’s readers, Benj. While reading Priscilla’s book “The Anti-Romantic Child” I was reminded time and time again of two things: Holden, and the “Musical Offering”. More than a book about autism, “The Anti-Romantic Child” is a book about a parent’s quest to come to terms with reality versus perception, and anticipation. It is a beautiful tribute to a child, and to language. To dreams lost, and opportunities realized. To the possibility of disillusionment, turned into a powerful faith in the written word and metaphor, and finding deeper meaning in those very same written words and metaphors. Most of all it is a love story of a mother for her child, and a seemingly unending amount of energy on that mothers part to do everything in her power to help the potential of a child be reached. “The Anti-Romantic Child” will be out on paperback next month, I strongly advise everyone to get a copy and read it (http://www.amazon.com/The-Anti-Romantic-Child-Memoir-Unexpected/dp/0061690287/ref=sr_1_1?ie=UTF8&qid=1332977703&sr=8-1).
Like Bach’s melodies, and hidden endings, Holden and Benj are so completely complicated, and sometimes unfathomable to comprehend, while still being so beautiful, inspiring and often reassuring. They have a way of weaving in their own melodies of life, in complicated, complex patterns that remain so pure and beautiful, innocent and melancholy. They turn our worlds upside down, and make us rethink our perceptions and preconceived notions of life. They are as fragile as a petal, yet as rigid glass. They endlessly surprise us with their mixture of inflexibility, and adaptability. Just like the “Musical Offering” there are surprises around every corner, and each turn is a lesson in life. They are our master works, inspiring us to help others appreciate the complexity, and graceful beauty that they both are.
I don’t think I can ever listen to Bach’s music in the same way I used to in college. I now have a far greater appreciation for the beauty in complexity and subtlety that I don’t think I could have ever appreciated if it were not for Holden. I can not speak for Priscilla Gillman, but I suspect the same is true for her and Wordsworth. I could spend years trying to get people to understand the subtle nuances that are Holden, but I think I couldn’t find a better metaphor for him, then Bach’s “Musical Offering”, beauty and grace, in complexity and sometimes seemingly chaos, that is Holden.
I think one of the strongest gifts a person can have is objective self analysis. I have already stated on many occasion that it is very hard to live in reality, and not allow ourselves to create our own reality. However, it takes going an extra step to try and self evaluate ourselves as often as possible. These moments of self evaluation are potentially dangerous though, because it gives ourselves the potential to victimise ourselves, so once again that objective honesty is very important. Parents especially require this skill, as we are required to make very important choices for our kids. We collect in as much data as we can. Data from our kids, from teachers, from observation, and from that data, we try to piece together our childrens reality as best we can. We try to set bias aside and look at our own kids from the perspective of an outsider. This is no easy task. Kids tend to be very biased, and are not usually full of details. I can’t even tell you how many times I have asked Zane what he did in school on any given day, and his reply would seem to only take up about ten minutes of the day. Certainly something had to transpire to take up the other six and a half hours of the day. So it starts from within ourselves, and being honest with ourselves, and evaluating ourselves.
It was during one such self evaluation that I made a discovery about myself. I realized that I am harder on Zane, because Holden is autistic. I want to be clear here, I am not saying life is harder, because Zane’s brother is autistic, that is certainly the case. Zane’s life would be easier if his brother were not autistic. What I mean is that I don’t think I would be as hard on Zane, if his brother were not autistic. This was not an easy thing for me to discover. I don’t like the idea that I treat Zane differently, and honestly, harder, because of his brother. So why do I do it?
There are a lot of things that Holden truly does not comprehend. They almost always pertain to social aspects of life. Like literally playing with fire, playing with sharp objects, running with sharp objects. All the things that most of us learn at a very young age. When I really stop and think about it, the number of things that Holden could potentially hurt himself, and others with, is overwhelmingly frightening. It is a constant worry for me that he could seriously hurt himself. So when Zane does something irresponsible, like take off to a friends house without his cell phone, I tend to get very upset with him, because he does know better. Is this something that most kids his age probably do, most certainly yes, hell his mom used to do it all the time when we were still together, and it drove me crazy. It is in those situations, that Zane just doesn’t stop and use his head, that I know I am too hard on him. I believe it is because everyday I see someone who can’t do so many things that other people his age can do, and then I see Zane who is so intelligent and so capable of so many things, and he doesn’t always do it. In terms of school, Zane has a bad habit of doing the minimum to get by. He is capable of so much more, all of his teachers, especially in the last four years, have all said this about him, and I see it myself when I help him with his homework.
It reminds me of the scene in Good Will Hunting, when Will is talking to his childhood friend, and his friend asks him why he is still working in construction when he has all these offers to do great things:
Will: What do I wanna way outta here for? I'm gonna live here the rest of my fuckin' life. We'll be neighbors, have little kids, take 'em to Little League up at Foley Field.
Chuckie: Look, you're my best friend, so don't take this the wrong way but, in 20 years if you're still livin' here, comin' over to my house, watchin' the Patriots games, workin' construction, I'll fuckin' kill ya. That's not a threat, that's a fact, I'll fuckin' kill ya.
Will: What the fuck you talkin' about?
Chuckie: You got somethin' none of us have...
Will: Oh, come on! What? Why is it always this? I mean, I fuckin' owe it to myself to do this or that. What if I don't want to?
Chuckie: No. No, no no no. Fuck you, you don't owe it to yourself man, you owe it to me. Cuz tomorrow I'm gonna wake up and I'll be 50, and I'll still be doin' this shit. And that's all right. That's fine. I mean, you're sittin' on a winnin' lottery ticket. And you're too much of a pussy to cash it in, and that's bullshit. 'Cause I'd do fuckin' anything to have what you got. So would any of these fuckin' guys. It'd be an insult to us if you're still here in 20 years. Hangin' around here is a fuckin' waste of your time.
In a nutshell, I catch myself feeling Zane owes it to his little brother to be the best he can be, because he can! Holden may never have a “normal” life. He may always be socially awkward, he may always struggle in school and work, he may always have to be taken care of, we just don’t know at this point. Is it fair to have this attitude about Zane because of Holden, HELL NO it’s not fair. When I look at myself, honestly, I see I am doing that to Zane. It means I have to be even more vigilant to not do it. Zane has enough pressure on him, having an autistic brother, he doesn’t need me treating him like the kid with the winning lottery ticket in his pocket, that he doesn’t take care of or treat with respect. We all have so many things going for ourselves, that we forget about, until we see people who don’t have those things. But Zane is just a kid, and he has a lot of time to figure out that he has a lot of incredible gifts in his life. Does that mean I let him waste those gifts, no. It means I don’t blame him for having them, when Holden doesn’t. That is what I have been doing to my son, blaming him for having what his brother doesn’t and not appreciating it. All I can say is, bad Jonas!
Having the never ending hope I have for my child’s future, is what motivates me to get him as much help as I can. By nature I am a very private, solitary person, and my home is a very sacred place to me. When Regional Center first approached me with the idea of in home services, I can tell you I had some reservations. I spoke to some friends who had received in home services for their child, and said that they were really beneficial. Like wise it has always been difficult for me to accept help. I feel very indentured to people after they help me, even if I have helped them in the past. It is not that people try to make me feel this way, it is just my natural reaction to being helped. I have had to learn to accept strangers in my home, and have learned to accept help when offered. These are the things I can do for Holden, that are in my power. However in a lot of ways Holden is very fortunate to possess some qualities of his own that have greatly benefited his plight.
For one thing Holden is very cute. I have no problem as a parent saying this, because it is not just my biased opinion. Even people who have never met Holden, but only seen pictures of him, think he is super cute. In person he is even cuter yet. Trust me, as his parent this isn’t always a benefit, because it is so hard to get mad at him, and even harder to combat behaviour issues by holding your ground, while this cute little kid gets so upset. When Holden pouts and gets teary eyed, forget it man, I am jello in his hands. What it has done for him, is gotten people to really want to get involve with his life, and help him in any way they can. From people who meet him for the first time, and are very giving and cooperative to his odd little needs, like closing the door of a coffee shop, because he is obsessing on it being closed, to people who spend more time with him, and really want to see him progress. I had a meeting with Holden’s teacher this week for parent teacher conferences. His teacher had great things to say about Holden, but it was his one on one aid, who said “I have to say, I just love Holden so much.” I could tell by the way she talked about him, that she truly enjoyed working with him, and was so proud of his progress. She also commented that everyday there is something new to learn about Holden. As a parent I can’t think of anything his one on one could have said to make me feel more happy. You can’t buy that kind of commitment to a person. I know plenty of people who work with developmentally disabled people, and they are all very patient, compassionate people, but they all have had their favorite clients. It’s not the easiest, or the best behaved, but those ones that just touch a part of their soul, and forever have a place in it. Holden touches people that way.
Certainly part of it is his cuteness, but that is not the only thing. There is a depth of thought, and a purpose of action behind Holden’s behaviours. They are not random, or malicious, or prone towards violence, they are heart felt needs that he can’t always communicate verbally. Anyone who has worked with Holden knows there is deep intelligence, thought, and logic behind his beautiful brown eyes. There is so much going on in that mind, that most people who work with him are so intrigued to find out what makes him tick. In the meeting with his teacher, she spoke of his intention, and wants. How everything he does is motivated, and not random. How fun it is to watch his trains of thought develop and unfold. They have learned at his school, as I am learning at home, to give him so latitude when he is not being “compliant” because chances are there is something simple he wants to do as part of the process. Something he needs to complete the cycle that he has foreseen in his mind. Once again as a parent it is so incredible to have his educators see the same things I see in him. To have the people who work with him as their job, appreciate him for the person he is behind the disability. Then there are the people who have helped us out, out of a pure love for him, with no want for compensation, just a want to get to the child behind the autism. These people have been wonderful, and helpful beyond words, and I am forever in debt to them.
Holden is also very affectionate. He loves to give hugs and be tickled. He loves to hold peoples hands, and snuggle with them. He and I are very close, and I feel so fortunate every time he comes up and puts his arms around me, or rests his whole body against my back, and puts his head on my shoulder. I feel so fortunate to have an autistic child that can not only bare being touched, but gets comfort from it. A child that can be consoled with physical touch, when there are many autistic kids who can’t stand being touched. They are to sensitive to this kind of sensory input.
Lastly, Holden has a great sense of humour. In order to know he has a sense of humour though, you have to truly know him. He will have so much fun taking advantage of anyone who underestimates his abilities. If you down play his intelligence, and comprehension of the world around him, he will toy with you solely for the sport of it. Those of us who do know him well, are not so easily deceived by him, but often just as easily toyed with. One of his funnest tricks to play, is to call someone by the wrong name. He may initially make an innocent mistake, but once he sees the reaction he gets out of calling someone by the wrong name, he will continue to do it just for the reaction. He used to love to call his aunt grandpa. He would hear her pull into the garage, and say “Aunties home”, but as soon as she walked into the house he would say “Grandpa”.
These are things you can’t make happen in an IEP meeting. You can’t make a person feel a personal connection with someone, they just have to feel it. All of his teachers would be dedicated to Holden’s well being, and do their best to help him no matter what. There is still something more that happens when a person feels a personal connection with someone. As for the people who have volunteered their time and energy for Holden, they wouldn't happen at all were it not for Holden himself. I have never been the type of person that easily makes connections with others, and the few that I do connect with, we have very intense, meaningful friendships. People are drawn to Holden, and he gets under their skin, and becomes a part of their soul. The best part is, he doesn’t try to do it, it just happens.
Zane is a very energetic and thoughtful child. Sometimes his enthusiasm is a little too much for the given circumstance. He tends to speak everything he thinks. I am trying to teach him to filter his thoughts, and decide with certain thoughts are really worth speaking. I think he would probably naturally reach this point on his own, however he gets himself in trouble at school for “speaking out”, in other words, not raising his hand and waiting to be called on. Also, he tends to ask inappropriate questions, nothing bad, but in the middle of history lessons the teacher may pause and ask if anyone has any questions, and Zane will ask what they are doing for P.E. after lunch. Not really what the teacher had in mind for “any questions?”. I really struggle with this though, because I don’t want him to not be enthusiastic about learning and sharing his thoughts, but I would like him to learn when it is appropriate. Sometimes Holden’s therapist will be talking to me and Zane walks up and interrupts us to show me his newest Lego creation. I want to see his creation, but it could wait till the therapist has left.
There is also another reason I have trouble with this issue. I was just as bad as a child. I used to forget my train of thought really easy as a child, and if I didn’t say what I was thinking right at that moment, it was gone. It was very frustrating for me as a child, and my mom would let me get away with interrupting her, knowing if I didn’t I would forget and get very upset. I had to make an effort as a preteen to stop myself from interrupting people when they would speak to me, hell I still have to make an effort to not interrupt people while they are talking to me. This sometimes makes it hard for me to express to Zane that he is doing these things, because I am being hypocritical in doing so. The only real difference, is my interruptions are for things on subject, not random thoughts drifting through my head. However, even in that respect I still have some issues.
I have my degree in music, and honestly love music. I love every aspect of music, song structure, melody, harmony, lyric if it is a song with lyric. In fact I love music so much, that it has become a bit of a hazard for me. When ever I am speaking to someone, what they are saying to me often reminds me of lyrics. At the most inappropriate times I have had people remind me of lyrics, and not been able to hide my internal thoughts. In other words I could be fighting with my ex-wife, when we were still together, and have her say something that totally reminds me of a lyric, and I can’t help but smile. Trust me this has happened at very inopportune moments. Imagine being in a heated argument and all of a sudden I start smiling, the opportunity to misconstrue that action is very great, and trying to explain the source of the smile sounds like an excuse. It drives Zane crazy too, when every time he says something to me I start singing a song in response. Sometimes he can’t believe it’s a real lyric, as I am notorious for making my own lyrics to existing songs, but usually they are real lyrics to real songs. Again, if he is upset, or mad, or whatever, and trying to express something to me, it can be quite annoying to get a song back for his efforts.
So once again, who am I to tell him that he needs to be more appropriate when if he asks me if he can go for a bike ride, I start singing “Bicycles” to him. Or he tries to tell me he had a bad day, and I start singing “Had a Bad Day”. When he asks me for help on his homework, I start sing “Help, I need somebody”. One of my friends, who frequently reads this blog, told me I should have my own reality TV show. She was basing that on parenting Holden, and all the things that come up as a result. The funny thing is, I think some of the more “entertaining” stuff may come from the Nuero-Typical people living in the house, not Holden.
Despite my own issues, which are many, I still need to parent Zane the best I can, and do what is best for him. Even if I have to be a bit of a hypocrite. I don’t like being a hypocrite, but I also don’t like holding the garbage can for Holden when he is sick, but sometimes you got to do what you got to do. Cut to Jonas singing “A man’s gotta do, what a man’s gotta do” from Dr. Horrible’s Sing-Along Blog (http://en.wikipedia.org/wiki/Dr._Horrible's_Sing-Along_Blog). Stage direction: Lights dim, and the curtain drops on another blog.
Bias, subjective, perspective, these are words I tend to use a lot, as well as objective, truth, reality. They are important words for me when I talk about my philosophies about life. To me, one of the hardest things to do in life is live in reality. It sounds like such a simple thing, live in reality, but the reality is, few of us do. We lie to ourselves, convince ourselves it is the truth, and create a whole alternate reality, that we cling to by the thinnest of threads. When something comes along and breaks that thread, our false reality comes crashing down. There is a reason that so many people are on antidepressants and anxiety medicine, it is because we refuse to live in reality, until reality comes knocking on our door. We lie to ourselves about ourselves, about our relationships, about our happiness, about our satisfaction in life, about just about everything. It reminds me about a girl I read about with Aspergers, who spoke about how she fits in at her high school. She says quite often she doesn’t understand why something is funny, but if other people laugh, then she laughs too. At least she knows she is lying to herself, but does it so she fits in. I think we all have done this to some degree. Living in reality is not always very fun, and requires us to be very honest with ourselves, but in the end, the truth will catch up with us if we don’t.
It is even more important to live in reality when you are a parent. Love is a very powerful emotion. It most certainly has the power to blind us. It becomes vitally important for us to fight the blinding affects of love, and see life through eyes untarnished by bias. Don’t get me wrong, there is nothing negative about love, love is pure and perfect, it’s us humans that are totally flawed. We are the ones that allow love to put blinders on ourselves, and look past our loved one’s imperfections. However, truth will still come a knocking, even if it is about our loved ones. People who don’t live in reality, constantly sabotage their own lives, and quite often those close to these people are powerless to stop them. Parents who don’t live in reality, sabotage their children’s lives as well as their own. There are so many reasons that make it hard to accept reality when you are a parent. It means we have to accept our own failures, not only as a parent, but our failures as a person. It means having to be the “bad guy” at home, and saying no to things that are not good for our children. It means not taking the easy road to MacDonald's, but rather cooking a meal. It means doing the research, and realizing that what foods we buy, truly make a difference. Most of all, it means seeing our children's imperfections, and not making excuses for them.
Being a parent of an autistic child caries all the same issues as being the parent of a Neuro-typical child, except with the added bonus of guilt. It also has a way of pointing out our flaws. With our neuro-typical children it is easy to say we did fine because they turned out fine. Good ole consequentialism again. We clearly paid the right amount of attention, because our kids are still alive. However, with an autistic child, you can’t get away with that. When we think we are paying the right amount of attention to our children, we turn around and find that they are engaging in fecal spreading. Autistic children have a way of point out our failures as a parent, better than black paint on a car shows dirt. They can find a weakness in our defenses better than the most skilled five star general. Plus they are super intelligent and have incredible attention to detail. I always use the analogy of the velociraptors from the movie Jurassic Park. There is a scene where they talk about how the Velociraptors are attacking the electric fence, but they soon realize they are never attacking the same section of fence twice. They were systematically testing it for weak spots. That is Holden, he systematically tests every aspect of surroundings, looking for a weak spot. If you let your guard down for a second, he will take advantage of it. He will seem completely engaged in something, so you think, “hey I’ll put some laundry to wash, he is engrossed in what he is doing” WRONG. As soon as he notices I have left him alone, all hell breaks loose.
So it is very important that we as parents keep a firm grip on reality. It makes us appear objective and realistic when we attend meetings with our children’s teachers, therapists, and other professionals. By doing that, it gives us credibility, even though we want to throw our arms around a teacher or therapist, and give them the biggest hug of their lives when they see the real child, our child, and not the disability. Like wise, I want his teachers, therapists, and caregivers to trust me with reality. The first person I ever hired as a nanny, I fired after a week. I had my doubts from the beginning, because she kept telling me what I wanted to hear, not the truth. I thought maybe she was just trying to sell herself, in the interview. However when I came home each night after work, and she said everything went great, and Holden was perfect, I knew she wasn’t telling the truth. I knew, because I was realistic about my child, and knew him well enough to know that he always tests new people. Eventually the truth came out, and she was not doing what I asked of her, but rather, doing everything in her power to keep Holden from having a melt down. Even if it meant letting him eat a whole box of cookies in one day. Maybe some parents want to be lied to, and told their children are perfect little angels, but if you tell me my children are perfect little angles, I’ll tell you that you have the worst case of cranial rectitis ever diagnosed.
