How Autism Changed ME: Hey That's Not Your Shirt

Saturday, May 24, 2014

Hey That's Not Your Shirt

It seems that my autistic son never comes home with the clothes I sent him with. I will scoot him off to school with a nicely matched shorts and shirt outfit (with socks that compliment the color scheme), but when he returns home he is wearing somebody else's blue plaid shorts and a red striped shirt and only one strange sock. Over the last year I have "lost" five pair of custom hemmed pants and three homemade "onesies", not to mention seven socks (each of a different color). I have gained a pair of blue plaid shorts which I return but keep getting back even though they have the name "Robert" on the waistband.

At school there are eight boys. All are non verbal and all don't care what they wear. So when there is a spill or a messy eater or any other reason to change clothes, the boys will put on whatever shirt or pants are available. And since the staff have to deal with eight crazy guys they probably grab the nearest pants possible and stick them on the guy who needs pants the most. Unfortunately, the clothes I love the most and have spent an hour cutting and hemming, never return. And I have so many mismatched socks I don't know how to cope with the pairing issue.

With the new season I have purchased several trendy shorts and shirts for the boy. I have also written his name in Sharpie all over these clothes. There is a chance I may see them again, but maybe not. This is why I shop the clearance rack. Now if I can just decide how to pair up those socks... is it ok to pair a red sock with an orange sock or is that totally uncool?

1 comment:

jaredJuly 16, 2014 at 10:05 PM
Totally cool
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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.