How Autism Changed ME: The Hazards of Holidays

Saturday, December 21, 2013

The Hazards of Holidays

Big holiday gatherings are an absolute nightmare for Autistic kids. My son can really put a damper on things if allowed to escalate into his evil tyrant mode. Still, he is an important and integral part of our family and thus far has been involved in the joyous events of our lives. Over the years I have learned that Tanner needs a little pharmalogical help to take the edge off his anxious and violent behaviors. But no matter how much I beg him to sit calmly and quietly, no matter how much I want him to politely join us for dinner, no matter how much I wish he would keep his hands to himself, he ends up being who he is. Tanner is a phenomenon. We all know him well. Family members have grown to expect certain occurances, such as: When food is involved we all know that we have to guard our plate. The boy is notorious for sneaking up from behind and putting his finger in your pot roast. Also people have learned to never leave a drink unattended because Tanner consideres all drinks to be his. Once he gets your drink you never want it back, aka. backwash. Also the family has gotten used to the fact that there will be absolutely no after dinner football on the TV unless you want a smack-down from Tanner the TV tyrant. My brothers soon learn that they are missing some skin if they try to wrestle the remote from the boy. Small-talk becomes Loud-talk as the family raise their voices to be heard over Tanner's vocalizations. All the while I am highly aware of his body language so that I can avert a sudden aggression. This is our reality and for the most part everybody pitches in to help. A little later, after dinner and when the little kids go off to play, I give the boy a second dose of "don't be psychotic" drugs and he starts to shut it all down. Calmly he will doze on my lap and then we are free to have boring, mostly civilized adult conversation.
So what I have learned is that typical family chaos, noise and activity brings out the worse in Tanner and that medication isn't really effective. But when dinner and dishes are done and people are just sitting around then, and only then, is the boy calm enough to let the drugs work. In essence, everyone wants to "experience" Tanner for a short while but we are relieved when he goes off into dreamland.

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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.