2011: AUTISM HAS US
When I think back on 2011, it is clouded with the ugly blur of autism. It consumed us last year. In fact, it chewed us up and spit us out! It ruined each part of our year by tainting it with guilt, dread, fear and heartbreak.
January: 11 months old and not a single word. I was beginning to worry about Maddox and to watch him more carefully.
February: Maddox turned 1 and I was sad that I had not been able to teach him to blow out his candle and he really hated the feeling of frosting on his fingers. Still no words.
March: Another ear infection and an Ages and Stages questionaire from the doctor. Too scared to fill it out. Still no words.
April: Back to the doctor for an ear infection. Feeling guilty because I still can't bring myself to finish filling out the form. Too many "NO" answers on the first page. Can't look the doctor in the eyes, hating the look of concern and pity I see there. And...still no words.
May: Another ear infection. Maybe he has hearing loss! (Feeling guilty that I was actually happy about this possibility!) That is the source of all of our problems! There is a reason he has no words! Threw away the damn questionnaire.
June: Passed the hearing test with flying colors, referred to a speech pathologist. Given a new questionnaire with a firm encouragment to fill it out. Speech pathologist was little help. She actually said she thought his problems were environmental. 2 working parents and an overbearing, attention-seeking older sister makes for a busy household where he is not getting enough attention. Spent the entire month in tears, wallowing in guilt and blaming myself for being such a horrible mother that my son was nearly a year behind in development.
July: Horrid speech pathologist gave me the number to CVRC and told me to call them for an evaluation. WITH NO EXPLANATION ABOUT WHO THEY WERE OR WHAT THEY DO! I came home and googled them and first saw the word AUTISM. My heart dropped down to my toes. Longest month ever waiting for our August 1st appointment. Finally filled out that awful questionnaire and fought the urge to wring the speech pathologist's neck.
August: Fears confirmed. He was not formally diagnosed but "was found to have significant risk factors for autism spectrum disorder" and qualified for early intervention services. More guilt for missing so many of the warning signs. Spent the rest of the month walking around in a daze and trying to find reputable information amidst all the crap and misconceptions out there. Thank God for some educated friends who pointed me in the right direction! Traveled to Laughlin, NV for a family reunion and spent the entire time in the bathroom singing to Maddox who would scream at the top of his lungs each time I tried to enter the room where the party was.
September: First evaluation from ACES to set up his ABA therapy. (Thankfully we didn't have to fight for services and were granted above and beyond what I had been prepared to demand.) Call from the Pediatric Developmental Department at Kaiser regarding Maddox's questionnaire and an offer for another evaluation and a formal diagnosis. Enrolled Mia in preschool, mostly to appease some of the guilt I was feeling for spending so much time and energy on her brother.
October: Trip to the Autism Spectrum Disorder Clinic in Rancho Cordova. Another evaluation and a formal diagnosis made it official. AUTISM HAS US. It has now officially taken over our lives and is running the show.
November: First ABA sessions. Trying to deal with the weirdness of having strangers in your house for 5-6 hours a day and listening to Maddox's cries of frustration as they try to coax him into learning. Spent Thanksgiving alone in a bedroom singing to Maddox who would scream anytime anyone else was around.
December: Hope! ABA is catching on, he's learning a few things, the weirdos in our house might just be a God-send, this might just work for us. Thank God this crappy year is over!!!
Read part 2 here
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