How Autism Changed ME: If Only...

Tuesday, October 15, 2013

If Only...

I know this one guy who lived with regret for many years. He had one son and that son had a bad case of autism. This father had grown up in a peaceful and rational home where his family members were productive and content, where each member thrived and had a talent to share. In his world, family members were above average in intellect and ability. And nobody had problems. So when this guy discovered that his progeny didn't fit the mold that he was accustomed to he didn't know what to do. He wanted to be a good father and insisted that his challenged son be familiar with all that is good in the world. This father wanted his son to enjoy the things that he enjoyed like travel, sports and family connection. He felt a penetrating guilt and disappointment when the boy didn't react like a typical kid. Sometimes this guy tried to hard to include his son in all things and mostly there was sorrow and bewilderment when these events went awry.It took a long time for him to realize his son would never go golfing or play a game of baseball or drive a car. It was painful for this man to look at the abilities of typical kids and realize that his only son was lost.
I can't say that he felt any better when he finally accepted the fact that his autistic son was not a part of the world. After coming to terms with living in an altered reality he started making adjustments and discovered that this strange, little creature of his had a different sort of ability. This boy had the unique ability to make a typical life more spicy. This boy had the ability to make his father want to be a better man. This boy could enrich and challenge his life in ways that were never expected. Every day and every moment with this boy was a wonder.

The key to receiving the most benefit from caring for an autistic child is to stop pretending that his world is the same as your world. It is not even close. Instead I choose to get a kick out of everything he does. I get a kick out of watching him belly laugh over the same scene of The Simpsons (which the boy watches over..and..over..and over...slow-mo, speed forward, rewind..watch again, then in Spanish). I get a kick out of how he spreads his food all over the counter before he eats it. I get a kick out of watching him splash in the bathtub.And most of all I love that he will lay his head on my lap as he goes to sleep.

NEXT UP: Accept Help

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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.