Being a woman of reason, I dived in head first into a sea of waves when I discovered my son had autism. From my limited knowledge of the medical/ teaching world, having only studied and worked in the world of numbers, data and corporate finance, I had not even realized I had created my own learning aberration, to me which was no less practical and obvious than the status quo. I made decisions the old fashioned way, gut instinct, and, at times, by ignoring research or taking advantage, to create my own conclusions, from the lack of available scientific research. I don’t regret my decisions, in fact, I am hopelessly happy, at my son’s accomplishments. I keep striving and pushing for more, as my nature defines. There are days I am just not so sure my decisions were the always the best.
Taking myself back 11 years, Niam was a flight risk, not toilet trained, and non –verbal. Was his autism severe? Some may say so, but in the end do labels matter or is the accomplishment more important? If we look at the latter only, Niam was graduating at the top of his class, an A student to say the least, mastering the goals I had set for him, toilet training, learning to take a shower, not leaving the house, talking, reading, cooking, overcoming taste sensitivities and navigating the highly sensory world around him. Having forgotten how he must have felt when I flung him into a world that made no sense to him, I question my decisions as a child ponders the existence of fairies in another parallel world to ours. Today is a different journey from yesterday. There is a silent negotiated deal of compromise, more like a partnership, that arouse out of an understanding of each other.
Niam’s day was full of therapy.
Recently Ravi, sent me videos of myself teaching Niam how to do the simplest task of holding a pencil, drawing lines, working and playing jointly with his brother. I sat with him day in and day out 7 hours a day. Learning various teaching techniques by none other than Dr. James Partington author of the Assessment of Basic Language and Learning Skills-Revised (ABLSS-R), I watched the video intensely and over and over again. Ravi was all praises for me, my sacrifices noticeable in Niam’s development and the countless skills he now possesses, however, an uncanny dark shadow fell over me, the thoughts not leaving me, I noticed in parallel to Niam spending his childhood working, is my elder son Rohan, playing with cars, enjoying himself, being a child, loving his childhood, without any pressures imposed upon him. So here it is, evidence, of a thought I would like to forget, the video clearly shows a narrative story of a mother, a family, forced to make difficult decisions. On the surface it may seem simple, but there are many other stories enfolded within the story.
I am not questioning the right or wrong, or saying there are any hard regrets on my part. I did the best I could with my available information and used my mother’s intuition to guide me, it is the mere observation of the video that brings to light a fact, there is a loss of a childhood for my younger child Niam. At the foot of of all this are the realities of life, responsibility, independence, learning speech and literacy all necessary for survival in this world. I have learned to relax and accept, a story on its own. Life today focuses on Niam learning functional skills for independence, nurturing his growing art career, learning literacy, improving speech, and most of all, playing. I ensure he plays. In fact, he still has all his “stuffed animals ” and toys that he still plays with today. I encourage it to the dismay of other family members who feel he should age out of them. I disagree. Watching him play, creates sparkles in my heart. This leaves me with an inner solace, it is never too late.