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.
I have made some illusions to some big things going on, the first of those big things is that I am forming my own non-profit, called Artists for Autism Awareness, or as I like to call it, “A Cubed”. I know you all want to start donating right now, but you can’t yet, as we are still in the formation process, so you are going to have to wait a little bit. However, here is what you can do: You can like our Facebook page www.facebook.com/artistsforautismawareness , you can follow us on Twitter @artists4autismA, you can go to our website www.artistsforautismawarness.com , and you can start spreading the word, share all this information with your friends and family. This isn’t my non-profit, it is our non-profit. It is a non-profit for everybody who has ever been affected by Autism Spectrum Disorder, PDD-NOS, hyperlexia, and the like. Affected by being a parent, sibling, relative, family friend, caregiver, neighbor, or a person living with these conditions. This is our chance to make a difference in these peoples lives, that we love so much. So here is what you do, join the social media machines on our behalf, spread the word, ask your favorite artists to participate in our concert series, help anyway you can. Here is what we are going to do: We are starting a concert series in April (April is autism awareness month) through www.stageit.com to raise funds for autism all year round. Those funds are going to go to research through a partnership with www.autismspeaks.org , to outreach and awareness, to family services, and music therapy. I promoted my first concert at the age of 18, I promoted my first concert for a non-profit at the age of 19 (a concert for Kenny Loggin’s charity Christmas Unity). For those of you who know me, I am a tenacious SOB, and I am putting my heart and soul into this project. There is so much excitement already buzzing around this idea, so join in the excitement, and be a part of something that is for an amazing cause. If you have any questions, comments, or want to help, or just want to encourage me, don’t hesitate to contact me. If you are an artists and want to do a show for A Cubed, then please, please contact me! We can make a difference, come make a difference with me!
