**The Train

[Guest guest]

http://snipurl.com/ukpmo [Age of Autism]February 28, 2010The Train By Deb MylanderAnytime the natural order of life is altered or skewed human beings, in general, have a difficult time accepting the different reality. For instance: parent's are supposed to die before their children. My Grandma lost her son (my father) to cancer when he was 44. That was 17 years ago and her heart still feels the pain where part of it was severed and buried with her child. Another example: children grow up and move away. However, having a child with a disability means this specific “natural order” is broken.Typical lives follow a rhythm of milestones and anniversaries. In one week my son will mark one of those milestones, his 12th birthday. The final year before he officially becomes a teenager. This birthday, more than the 11 others before it, is causing me a lot of fear and trepidation. In six short years he will technically be an adult. What will adulthood look like for him? Will he be able to drive? Hold down a job? Manage a house on his own? Will he ever have a girlfriend? At 12, on his best days, he has the mental capacity of a 6 year old. So does that mean at 18 he will act like a 12 year old? I don't know the answer to any of these questions, but they are replayed in my mind with a steady rhythm much like the sound of a train moving down the track. I see old women in the grocery store with their adult disabled sons and I often feel like it is a window into my future. I think of these as my “crystal ball” moments. There stands a woman hunched over and frail trying to give verbal instructions to her son who has a middle-aged body and a child's mind. There is a reason that we are meant to have children when we are younger, it's because the amount of work that is involved in rearing them requires youthful energy and stamina. When a child has a disability, like my son, the child rearing gets stuck forever in first gear, yet the car (the parent) continues to age and decay.In my best moments, I see my son living the life of Forrest Gump. Being able to travel the world and experience an alternative existence and among other people involved in extraordinary things. However, in my worst moments, I envision him living in our basement with black plastic covering the windows wasting years away in front of video games or the computer.My son's disability has forced me out of the here and now. Right or wrong, that is what it does. Everything I do for him is in hopes that it will allow his future to be less restricted. At times people will say to me that all children have the potential to end up with a tragic story, “Johnny down the street could end up in jail,” “Becky around the corner could end up pregnant at 14.” Although I consider this well meaning advice, it doesn't lessen the fear I have for his future. The scenarios for Johnny and Becky may come true, but they don't have a diagnosis that virtually guarantees a bleak future.In one week my son turns 12. The “crystal ball” moments are happening more frequently because he is looking more like a young man and less like a child. My anxiety about his adult life has ramped up to a steady drone. The sound of the train chugging down the tracks used to be very faint and far off. It has become much louder and more persistent, like this morning when my son uttered words that might as well have been a train whistle blowing loudly into my ears. He said to me, “Mom, if you wouldn't have given me those shots, it wouldn't be like this.” He told me this after getting in trouble for leaving his shoes outside in the rain (again); staring off into space instead of taking his vitamins and medicine like he was supposed to; fixating on his lego's instead of getting dressed; and not being able to find his homework, lunch bag and coat. His words stopped me in my tracks. Up until that point my eyes were seeing red. The red suddenly became very blurry. He was right. None of this was his fault. He can't help it that his brain is unable to process auditory commands. He can't help it that he is never invited to birthday parties or after school play dates. He can't help it that he has autism. I should have helped him and I didn't know any better. My eyes and heart filled with the same familiar tears of regret, anguish, and despair. All I could say was, “I'm sorry.”I didn't or couldn't protect my son. But I'll be damned if I will ever allow him to be hurt again. That is why I will keep looking for ways to help him learn and methods of learning that work best for him. That is why I will continue to buy and cook meals that require the combined knowledge of my great-grandmother, a professional chef, and a naturopath in order to prepare. That is why I say “No” when all of the experts tell me that multiple vaccinations and a diet that includes sugar,gluten, and wheat are perfectly safe and only “wackos” believe the opposite.What I see in the “crystal ball” at times scares me, at times paralyzes me, but it also makes the fire of determination strong. So, I may end up being the old woman hunched over the shopping cart. But maybe, just maybe, my son will be standing by me, giving me directions and being a much needed and loved companion in my last years on this planet. Deb Mylander resides in Oregon with her family. =====In accordance with Title 17 U.S.C. Section 107, this material is distributed without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes.