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.
