Monday, January 17, 2011, Donna Sauraq Erickson of Unalakleet, Alaska, posts the following on her Facebook wall: I remember the day of my son's diagnosis. Autism. The Doctor's eyes, His voice, Empathy & compassion. "Lifelong disability" The nurse's station in Nome. No cure. How his words "I'm sorry" still sting. Silence. Unbelievable. I held my struggling son close, hoping they were wrong. What was autism? I had never heard it before. I had forgotten. Home. Endless hours on the internet. Reading anything I could. I went to the school district library & checked out 4 big books. I cried. I read. Sleep deprived. Logan screaming, running, throwing himself against the wall. Over and over. And over. Non stop. No sleep One night. Two nights. Three. I called work & said I needed to quit. My boss flew to Unalakleet. Told me to take some time off. 4 months. They sent someone to put an aircraft radio, huge antenna, hand held radio, & phone line. "You can work at home now" Blessed. Autism is messy. Daily. Weekly. Non stop diaper changes and stripping beds. Cleaning smeared poop on floors & walls. Became a habit. Logan twirling round and round and round. Non stop. Head banging Prayer. Leaning on my strong husband. Learning to live on no sleep. "We'll sleep when we die" became a private joke. Tried many things. The latest cures. Signed up for the medicaid waiver. 6 year waiting list. I didn't have six years. So I called. Daily. Governor Knowles. Than Murkowski. 3 months straight. Maybe 4. At 10 and 3 Everyday. "Sorry" Didn't stop. My son needs therapy Now Not in six years. Murkowski finally said "Okay I've had enough.." He decided to come to Unalakleet to go fishing and talk about autism. Tom Daschle. Powder, envelope. Terrorism. Government plane turned around. "Sorry" "I can't make it." "We'll talk another time" I have no time. I cried. Tired. Need help. We were too tired to fish. No dried fish. No berries. No subsistence. It hurt. Felt Lost. Days. Weeks. Filling out manifests, did I get the numbers right? I'm sorry I would tell pilots. "It's okay" They'd say. I could see some were sorry and some didn't know what to say. I learned to not let anyone know. Became a habit. Prayer. and more. Ted Stevens. Denali Commission. Looking at the new seawall in town. "Can you help me?" No. That's state level. I'm on a federal level. He saw my tears. "Talk to me" he said. I told him everything. He made a phone call. The next day Logan had the waiver. up to 80 thousand dollars a year for therapy supplies treatments. Trampolines, trainings doctors vitamin b shots Logan & I went to a conference We met Temple Grandin She helped me She looked for us in the hotel "I know what he feels like" She said. Press him. Squeeze him. He needs it. Home. It calmed him down. but still Tantrums crying sleepless nights unending. Poop smeared on walls bathrooms flooded washable paint isn't washable. Food crushed on the floor on the bed on the couch in every room everyday still today. non stop Moaning Crying hitting himself on the head. Prayer. Exhaustion Autism is expensive doctors medications sensory equiptment You cannot go out. No ball games No potlucks No church. 10 years old still changing diapers We cheer and clap when a word is finally said one word. "Bugging" Logan said when annoyed. What joy! What triumph! So precious and innocent relief when he finally falls asleep rest from anxiety his anxiety his fears lights on always lights on fear of the dark Unhealthy diet chips chips and water keeping him alive how does he grow? Then we met Juke life saver comforter reliable faithful Sleep. for once, sleep. Logan starts dressing himself Accomplishment. triumph! he says a word here and there What joy! Laughter overcomes the tears Triumph overcomes the devastation Small accomplishments Make huge celebrations. Logan still pushes Juke away But he sleeps better with him. and I sleep. We sleep. Triumph. My boys help. Daily. Dad takes night shifts We take turns. Juke changes this. So many people to thank Big hearts Caring hearts helping hands. Logan & Juke are asleep. My time is up. Precious sleep Here I come tomorrow continues Our Journey With Autism.
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My friend, Donnie Kanter Winokur, relentless advocate for people with disabilities, reminded me that this week TV airs two shows that are of great interest: Front of the Class, written by Brad Cohen, and HBO's 'Temple Grandin' Offers Inside Look At Autism. FRONT OF THE CLASS, the "Hallmark Hall of Fame" presentation starring Patricia Heaton ("Everybody Loves Raymond"), Treat Williams ("Everwood") and Jimmy Wolk ("The Spiral Project"), will air on CBS Television Networks on February 6, 2010. The drama is based on the true story written by Brad Cohen who, after being challenged by Tourette's syndrome from a very young age, defies all odds to become a gifted teacher. Brad reminds us all that dreams can come true! As a child with Tourette syndrome, Brad Cohen was ridiculed, beaten, mocked, and shunned. Children, teachers, and even family members found it difficult to be around him. As a teen, he was viewed by many as purposefully misbehaving, even though he had little power over the twitches and noises he produced, especially under stress. Even today, Brad is sometimes ejected from movie theaters and restaurants. Temple Grandin offers an inside look at Autism. She grew up to be a world-renowned expert on the handling of livestock and arguably the most famous person with autism in the world. Read more about her at Disability Scoop.