How Autism Changed ME: The Sameness

Sunday, January 5, 2014

The Sameness

     I often look through old photos and videos of my Autistic son's past; way back when he was younger and smaller. There are so many "Tannerisms" that I notice now that I am experienced. Back in the days when I was still guessing at a diagnosis I didn't see the subtle yet classic quirkiness of Tanner's movements and gestures. I have pictures of him as a two year old flapping his hands in the exact fashion that he does today. I find photos which show that he started biting his right hand quite early in his life. There are photos of him pinching the skin of my face between his thumb and forefinger in the exact way he's done for the last 15 yrs. When I notice images of a young Tanner grabbing and "twinging" the tendons behind my knee or "messing" with the sinew in my neck I see how he has always done that. In watching videos of a seven year old Tanner I notice the ritualized routine of turning on and off lights, patting a certain part of a certain wall .

     Besides body growth and voice pitch, the boy hasn't changed at all in eleven years. His movements are identical, his thinking patterns and his interests have remained downright fixed. It is a curious thing really. As Tanner's body changes his mind remains forever the same. The little pinches of a two year old are damaging as a sixteen year old. Light hugs from a spindly four year old are manageable but bear hugs from a sixteen year old sometimes knock me off my feet. When a six year old takes your hand to show you something it is a pleasant thing. But when a sixteen year old has a death grip on your finger and won't let go it can be a bit disconcerting.

     One thing is for certain; I really know my boy! I know the meaning of each sound he makes, I know what he wants just by his facial expression. I know his likes and dislikes more surely than I know my own. And the best thing is that I get to live with a teenage boy who still loves his mommy and is not ashamed to show it (although the heavy hugs and slobbery kisses do get a bit tedious at times).

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In The Beginning

Once upon a time I was timid and indecisive. Once upon a time I was needy and insecure. This luxury started to change when I had my first baby, my abnormal baby. He was a perfectly wonderful baby to me. He nursed well, he got fat and smiled and played. Except he was to relaxed and content. He didn't move much, didn't hold his head steady and didn't make much noise; true dream for a new mom. I remember how I held him, how he melted into my arms. He never tried to wriggle out of my grasp. Later, I would watch him miss milestone after milestone. They called him floppy, hypotonic and "a touch dysmorphic". They were worried about my boy's development. So after seeing specialists who provided me with lots of meaningless well rehearsed uncertainty; and thereby receiving absolutely no workable information toward a diagnosis or plan, I left with a twinge of hope but mostly despair. I wouldn't find answers unless I diagnosed him myself. I would research until my hands fell off.

Milestones and Diagnosis

Milestones are those special developmental events which occur when your child starts climbing the ladder to success. Milestones are the"firsts" that moms get so excited about. My boy's first independent steps were at age 5 so you can imagine that even the basic accomplishments were long in coming: sitting unassisted at 10 months, crawling at 2yrs, speaking at....never. During the early years of research and development I got a diagnosis of FG Syndrome, an x-linked chromosomal condition. My son fits most of the physical and mental characteristics but can't be tested definitively because this syndrome hasn't been mapped yet. At the time I clung to this diagnosis because there was such a wonderful support group who could answer my questions. By the time he was 6 years old I was getting the raised eyebrows of specialists when I mentioned FG Syndrome because of their unfamiliarity with it. Later I became content with the diagnosis of AUTISM with a possible unknown genetic component which accounts for his "look". ie. small chin, prominent forehead, downward sloping eyes, hypotonia.

Fifteen Years Later

I have lived with a low functioning autistic child forever it seems. I have seen my boy grow from an infant to a 120 lb teen. I have changed from being a passive soul to being a strong soul. Before autism I was directionless, after autism I have lived every single day with profound purpose and significance.He has been such a joy to me and such a frustration. There were years of astonishingly violent tantrums accompanied with moments of joyous affection. I learned to accept help. I learned to be patient.Most of all I have experienced the incredible gift of unconditional love. I am living a full existence by giving up. I have given up trying to be the perfect mom. I have given up trying to control my life and his life. We are out of control but we don't care.