I could not be more blue!
I'm all decked out in blue--the only blue I own--changed my Facebook color to a special blue, and my profile to one of the symbols that represent the reason for my blue day.
Today is "Go Blue For Autism" day. April is Autism Awareness Month. The numbers are staggering. Today, 1 in 88 children are born with some form of Autism. Earlier in 2012 the odds were 1 in 166. In the eighties the odds were 1 in 10,000, the nineties, 1 in 2500, as time went on, 1 in 1,000. Someone you know, probably has, or knows a child or adult with some form of Autism. Questions swirl in the medical world to explain the increase. So many theories are put forth, many are received by the parents as ludicrous, as they live with the challenges, and can discount ideas of parental actions causing it. So much needs to be discovered!
My interest in Autism goes back to High School, when I chose a book about a little "lost boy" as my English book report. The book was called "Dibs, In Search of Self" by Virginia Axline. The world that Dibs lived in was mysterious, unlocked by no one, until the author, a psychologist, tried some, then unproven, methods to bring Dibs into "our world". Through intensive , exhaustive therapy sessions, Dibs became a functioning member of "our world". I shared the victorious feeling of the author, and the interest in Autism stayed with me.
Last year, I had the pleasure of "meeting" a wonderful young man named Brandon on Facebook. He had Asperger's-very high functioning. I'd like to share our friendship with you.
I had already met his entire family, when his oldest brother let him chat on his Facebook account. He'd heard my name around his home, due to my friendship with his brother, and wanted to meet me. Our first chat was shortly after his brother, Jake, passed away after a 7 year battle with Leukemia. His first conversation consisted of confusion. Why, he wondered, did his mother always call his brother "her baby" when he was neither the youngest, or her birth son? I gave an explanation, and he seemed satisfied. And so began our learning from each other.
Brandon's life became tumultuous after his brother passed. His mother that did not understand, nor care to learn, how he saw life, and abused him as a result. He was torn between hating her and feeling he had to like her because she was his mother. Her time, nearly his entire life, was spent on Brandon's ill brother. Taking her place, was his oldest brother, who at age 14 was struggling with Brandon's episodes, and teaching him to talk. You see, he was mute for the first eight years of his life. And one day, he spoke. In sentences. His brother's love did that, sparking Brandon's dream was to be a doctor.
As we grew closer, our chats became daily, and lengthy. Our conversations would start with his greeting of "hi", so I would say "hi". He would repeat, "hi", and I would too, and then one of us would throw another word in there like "low", and the game would continue until one of us asked how the other was. Brandon was empathic to my medical struggles. Yes, I said empathetic. Not a term associated with Autism. Brandon had a wonderful sense of humor. I had to be mindful of my "sillies" though, because, as Aspies do, he would take exaggerations and sarcasms literally. It could be a challenge explaining the figure of speech to him, but it was part of our learning from each other.
During the summer of last year, he got pneumonia, and long story, short, he suffered injustices and abuse that led to a lung transplant. Sadly, after being in the wrong hands, medically, led to the fail of the lungs. And a second transplant. During this time, our conversations continued, and he relayed the discomfort of his illness to me. It was heart wrenching to see "why am I so sick?" in my message box almost daily. He became weaker and weaker, and I think we had some of our best conversations during those times.
Brandon, while in his hospital bed, explained to me one day, how his world looked, tasted, sounded. It was amazing. How some days seeing too many things overwhelmed him and made him angry with everyone. And of course, that is when he would hit, kick, bite...anything to get his point across. He tasted color. I asked if he meant like purple tasted like grapes, and he replied, "No, grapes taste like grapes." Silly me! He tried very hard to explain that one, but I just settled for the concept. Some days he could hear every single thing, and it would lump all together into an enormous mind engulfing sound. At one point, he shut down for three days. He was within himself. There was the danger that he may not come back. Oh how we rejoiced when he came back to us!
By this time, Brandon's second lung transplant was failing, and to make his life even more difficult, a mass was found at the back of his head. Surgery was unable to get it all, and his health declined. All the while, he was chatting with me. Even during his darkest days, he told me what he saw, and how he felt. At one point, Brandon passed for a short time. He told me the most wonderful accounts of Heaven. We had had chats about religion in the past, and he always said he was afraid to die because God scared him. He was too big. But, after his visit to Heaven he returned comforted that "it wasn't so bad." He saw his brother, Jake, and was happy to see that Jake had hair and could walk. We talked about Heaven and how he, too would feel better some day.
As he became more ill, he would drift in and out of consciousness, and see Jake who was trying to get him to join him, which ticked him off because he didn't want to leave us. One day he relayed to me that Jake had made a new friend in Heaven. How wonderful, I said. There was something coy about the way he said it. You see, my Mom passed away 10-12, after 4 years suffering the results of a stroke. "Your Mom's name is Carol". At first I stared at the screen. When realization hit, I sobbed loud, guttural sobs that Brandon probably would have found too loud! He then told me her first and last name. I had not ever discussed my Mom with him other than to say she was ill. Jake's new friend was my Mom. "She's really pretty", came Brandon's assessment. I agreed through sobs. Jake had found Mom like I told him to, before he passed, and now he was introducing her to Brandon.
From time to time during the following 10 days he would tell me he talked to his brother, and many times Mom was there. My heart soared and I thanked him for sharing that sight with me. His time was running short, and, having spent so much time visiting with Jake, he knew the exact time of his death. He wanted me "there". It would be in the middle of the night, so I set my alarm, and got up to joke with him one last time. I'd prayed for Mom to help with his transition, and when the time grew near, he told me all his angels were there waiting to take him. I asked him if my mother was there and felt so happy to hear she was! The minutes ticked away, and he finally said he had to go now. "Have fun with your puppy"...and he was gone. At the exact moment he foretold.
There was nothing "blue" about Brandon. He didn't even like blue because it tasted bad. But, today I wear blue to support the millions of parents and their very unique children--and adults--that live their lives around some spectrum of Autism. A reason for it's existence needs to be found, but until then, please support them. Read. Watch TV specials, Google, but learn about Autism. With odds going at the rate they are, you WILL have contact with someone with it. Please be kind and educated.
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