Focusing the Lens

autismribbonbreastcancerribbonUnless you live in a place where there is no media, you know it is Breast Cancer Awareness Month. There are pink ribbons and items everywhere and for those of us that are over a certain age, it reminds us to go get a Mammogram and not be complacent about our health. (Just so you know mine is scheduled for November 5). But to me, the interesting thing about this month is that it’s not my month. My month is April. What do I mean by that? My month is Autism Awareness Month which is April. World Autism Awareness Day is April 2 and we light it up blue that day. Our ribbons are a medium blue. So seeing all of the pink out now I am reminded that each of us has a cause that is near to our hearts; either we know someone afflicted by a disease, disorder, or condition, or we are sensitive to those we care about and their concerns.
Raising a child with autism is not in any way like having breast cancer. However, humanity itself allows us the flexibility, the mental space, to care for others even though we have no true sense of what they are going through. We have the ability to empathize, sympathize and offer solace. I work with several women who have survived breast cancer. I am amazed by their resilience and tenderness. I am also amazed how these women often reach out to me to help me when I’m feeling down about autism. So you see, overcoming something or learning how to cope is not one dimensional. Learning to deal with the unimaginable, the unknown, and the unforeseeable may be a secret club, but it’s not exclusive to your plight. I also notice the reciprocity of support, will you support my breast cancer event and I’ll support your autism event? There is a symbiotic effect that is both necessary and comforting. I had a friend who passed away a few years ago from cancer, not breast cancer per se, but cancer of the lymph system. He and I had grown up together and although we were not in each other’s lives on a daily basis we had an awareness of each other’s lives. About a year after Bryan was diagnosed with autism and he was diagnosed with cancer we spoke for the first time. There was an undercurrent to our conversation, an unspoken, did you ever think things would work out like this for us? So during this month of breast cancer awareness I am going to focus on just the awareness part; the awareness of others and their concerns and reminding myself to adjust my lens away from the myopic setting.

The reason I jump…

HigashidajonstewartSo at some points I can imagine a suicide note entitled ” the reason I jumped” but that is not the title of this post. The Reason I Jump is a book from the author David Mitchell and I just finished reading it yesterday. The book is a translation of thoughts, answered questions, and short stories from a 13 year old Japanese boy with autism, Naoki Higashida. David translated it into English; he too has a son with autism. I first learned of this book from The Daily Show. Jon Stewart had David Mitchell on the show as a guest and I was riveted by the topic, of course, and Jon Stewart’s sincere enthusiasm about the book. Like most suggested books on the subject of autism, I had to have it asap. Unlike most books about autism, hearing from someone with autism is always the most meaningful. I always want to learn more about what is in Bryan’s head or how better to work with him, communicate with him and to connect with him. What I learned from this book was both joyful and sorrowful. The joy, the blessing, is to learn that my boy, if he is at all like the boy in the book, is experiencing all of the typical feelings a 13 year old boy should have. Perhaps just that the boy is the same age as Bryan struck a chord with me. The sorrowful, well, it seems that logic and autism are diametrically opposed with respect to parenting. Some of the things I do (don’t like to use we here since Earl and I often approach Bryan in different ways and I’m not going to throw him under the bus I’m going under) may seem to make him more anxious, more upset and more self-conscious. Naoki shares that when he repeats or calls out or exhibits behavior that is not typical he does not mean to do this; he needs more and more patience to show him that we are on the same side. He says “please do not give up on us”. Wow, that’s like taking a dagger straight to the heart. Ever since I have finished the book I have been emotional. You see, I read these things to learn, but I don’t always learn. I try to listen to every word Naoki says, and although there are differences with each child with autism, I try to implement changes. Old habits die hard. This morning Bryan was yelling and yelling for no reason. He was bored, he was looking for my attention while I was putting away laundry, he was just showing his autism. I yelled back, not even really at him, but almost like a cry out. Only the two of us were home. Immediately I felt like a piece of crap and apologized to him over and over. Naoki’s voice was in my head…patience, patience, patience. One of the most fascinating things about this book is that once Naoki really gets something, he writes a story to illustrate it’s meaning. These stories are so sophisticated and simple at the same time.
Yesterday Bryan had Football Buddies and today Running Buddies. If you read my blog you will know this is a local program where a typical 10+ age kid is paired with a special needs kid to participate in the named sport. Both days Bryan was compliant. I say compliant because I am truly unsure if he enjoys this in any way. As I watched him both yesterday and this afternoon, I kept thinking about Naoki wondering what he would say about these forced sports events. I kept thinking about whether or not we are doing a good thing or a bad thing to have him do the sports? I want to scoop him up and run as fast as we can to a deserted island. He can let his autism hang out and we don’t have to worry about school or sports or anything. We don’t have to think about stares from people in Target, or learning how to live in a society that doesn’t get us. It’s a fleeting feeling that comes every now and then. I think it comes when I realize that part of the angst of parenting a child with autism comes from the push and pull of forcing them into our rules when their brains tell them otherwise. I am fascinated by other parents too. I want to ask them, don’t you ever just think we’re getting this wrong? Shouldn’t we start a new community? Shouldn’t we let them be? Ugh, ugh, ugh. I realize after reading Naoki’s thoughts that my focus must be more on reaching out to the emotional Bryan. It is not ok to only interact on a surface level. I need to let him know that he is a young man and that although he does not tell me certain things, I know them to be true. He works so hard to learn, to try, to grow. I need to do the same. He gave me a really sweaty kiss at Running Buddies. I live for those sweet kisses!!

Are you smarter than a fifth grader?

I’m beginning to wonder if I am. Jason is in 5th grade. Now don’t get me wrong, I can do all of the math, science, etc. I am not concerned if I am smarter than him in 5th grade academics, but not sure I am smarter than him in life. So all of the challenges you face as a parent of kid on the spectrum are incredibly taxing and can wear you down mentally and physically. But, the typical kid, with his savvy, his sarcasm, and his ability to push your buttons, well, this requires a different kind of parenting. If your child is a mirror image of you (or me in this case) let’s just say I’m totally screwed. This kid has the ability to demonstrate down to the specific breath every bad quality that I have modeled for him. He gestures, sighs, gets frustrated EXACTLY the way I do. If it wasn’t so dead on, so pathetic to watch, I would laugh or congratulate him on a great impression. He uses expressions to “negotiate” over homework that he hears between Earl and me and I cringe the whole time. So I think to myself, hmm, I have to outsmart this kid. I need to be one step ahead of him in the power struggle they call growing up. There are so many issues here.
I need to get him to do his homework and take pride in his work. These concepts seem to be mutually exclusive yet shouldn’t be. I always cared about my homework, Earl always tells him how he didn’t and regrets it. Nope you cannot impart experience to your kid, we all know it doesn’t work that way. I need to change up the strategy clearly, from threat of punishment to incentive. Easier said than done.
He knows how to play me. He knows where the bodies are buried. Last year he let me know that he needs more attention from me at night and clearly attention equals doing homework together. I am seriously happy to comply. I feel if I spend time with him to show him the homework is important to me, he will try harder. Um, not so much apparently. Instead, it’s become his time to test me.He is so easily distracted and he knows that frustrates me. FOCUS!!!! There is a subliminal how much mommy time is available and how long before I can frustrate her thing going on here? How can I monopolize her time away from Bryan who seems to get all of the attention I want? I know he does not intentionally set out to do this; he is a good-natured, sweet kid. When we read together he holds my hand or snuggles up to me. He tells me he loves me every morning when I drop him off and gives me a warm, sincere kiss and hug goodbye. However, five minutes into reading he says he’s bored. We signed up to do the Reading Promise which is 100 days in a row of a parent reading to a child. The school talked about how you will bond with your kid and how they will want you to go on way past the required time. I even took the book we are reading together on my business trip last week to so I could read to him over Skype. Nope, he is not interested. He sets a timer, we are required to read for 11 mins(one minute per year for kid’s age) and even before the time is up he says he’s bored. Damn cuz, that’s just cold. However, he would like me to spend hours watching him play Minecraft or Sims.
So what’s my point? Well on the one hand I guess I am just experiencing behavior and challenges I have not had with Bryan, due to autism and his inability to communicate in a way that will manipulate me and guilt me like Jason can. It is a revelation in a lot of ways. However, as most of my parenting experiences go, it makes me think about Bryan and his need for attention too. It is easier to put him off since he really won’t complain about it. He is efficient, comes home opens his books and does his work. Autism, at least for Bryan, means you follow rules and homework is done when you come home. You gotta love it!! Last night on the Daily Show (which I love, not just for Jon Stewart who I think is so awesome but I also loved John Oliver all summer) Jon Stewart had on David Mitchell who translated a book by a 13 year old Japanese boy with autism. To listen to David and Jon exchange thoughts about autism and autisms as David said, (I love that by the way) I was touched by the sincerity in which Jon Stewart expressed interest in autism. I know he has been involved in many fundraisers (another reason why I geek out over him). I was also reminded, through their discussion about the boy in the book’s awareness that his autism stressed out his family, that Bryan needs reassurance that spending time with him is valuable too and that he is not a burden, he is a joy. Probably a good idea to watch the Bar Mitzvah video with him again.