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Apr. 7, 2009
Experiencing Autism - The Reality
April is Autism Awareness month. April 2nd was World Autism Day. April 4th was a local Autism Awareness Fair ... I tried to go. April 25th was a local Autism Walk..... I didn't go.
These things are fine - these things are good. But I don't think that you can really 'get' what autism is until you experience the realities of autism.
You can hear and read about it - the lists of characteristics, the possible causes, the parent vents, the newspaper blurbs and articles. But you don't really get it. Even when you have a friend or a relative with someone with autism, you don't really get it. Not unless and until you have spent extended days and hours with an 'autism' child and family "experiencing autism" can you really get it.
Perhaps you can understand the endless sleepless nights ..... you may have had a colicky baby who couldn't sleep. But sleepless nights became the norm .... every night for at least 2 and 1/2 years, then finally, slowly and with the help of melatonin ..... a more normal sleep pattern and now we have only maybe 1 or 2 nights out of 7 with irregular sleep, usually during the phase of the full moon (really).
Your baby may have liked (or not liked) to ride in a carseat. But did he want to spend half of his waking hours there? Until he was 8?
Did he like to be carried and hang on your neck or sit on your lap? I still pick up my 8 yo. He is just starting to hug me.
Maybe you have had a toddler who didn't like to wear their clothes. I dress my son over and again throughout the day.
You may have had children who loved to play in the tub. But mine wants in there all the time.
Most children love music. Our would cry and cry if the tape stopped until the music started again. Yours like Thomas? I've played them more than anyone.
It's cute when a prereader asks you to "read it again" or "tell it again". But doing it again in some things feels ridiculous.
We love our readers to want to always be reading. But what if they were just turning pages endlessly, sometimes upside down ...
Autism changes everything. Your behavior, your expections, your reactions, your patience, your tolerance, your friendships, your family relationships, your church attendance, your visits to anywhere, your medical visits, your meals, your evenings, your thoughts, your prayers, your life mission.
Autism takes over your life and changes it.
(This was a draft of an essay I didn't finish but decided to post anyway.) |
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