Well, now that we've had 24 hours to digest the prior 48 hours, I am ready to put thoughts into words. At least partly.
To recap, Wednesday morning we packed up the car, loaded the kids and headed east to Omaha, stopping 3 times in the first 90 miles due to one or more screaming children, arriving at our hotel 8 hours and 10 minutes later. The room was absolutely ideal for us, an over-sized two queen suite with a second sink in the mini kitchen. We brought two fold out toddler beds for Eden and Lars, which set up perfectly by our bed, and had the crib for Elia, which fit in the walk in closet, leaving lots of space to vroom cars, play house and read stories on the couch on the other side of the room.
After a quick supper, the kids and I went down to the pool to see it and check out the lobby of the hotel. Cookies and beverages were on a side table and I asked the kids if they'd like a cup of apple juice before bed. There were two clear pitchers half full and I poured some for Lars, who drank it down all at once and threw his cup away, running towards the elevator, gave the second cup to Eden, who took one slug and said, "this tastes terrible" and then poured some for myself. After my first swig, I looked at Eden and said, "this is for Daddy" and walked away. It was beer.
At 11:00p.m. that evening, Al went out into the cold to pick up Grandma Kenny from the train station, who arrived about 11:40. They got back to the hotel shortly after midnight, Elia climbed in bed with us at 0100 and Lars was awake shortly before 0500, ready for breakfast, which didn't start till 0600. Thank God I'd picked up donuts the night before.
Shortly after the sun began to rise, Al and I headed out the door, grabbed a bite to eat in the lobby and headed over to the conference center. Bill and Reagan Boyer, friends from Bridgeport who also have a young son with sensory issues, met us at the book table after we registered and received our 100 page 'follow along' packet, and we were almost immediately swept into the room and found our seats at the table with the three educators who came from Bridgeport schools.
In the first 90 minutes, we learned more about sensory process disorder and the functions in the brain that the disorder affects, what the causes of SPD are being attributed to and the hope that the future brings. The presenter played a video of a 6 year old girl who was getting her clothes changed one morning, and the mother was holding her and gently talking to her, while the girl was screaming "I hate you! Why do you hate me?! You're killing me!" at the top of her lungs. With a lump in my throat, I wondered if that's what went through Lars' head every morning that we get dressed, and every diaper change that he screams through, and every night that we get pajamas on, on every day that he's been alive. If he had the language, would he be screaming that I was trying to kill him? It was heart wrenching, but so real that other mothers have had a child like mine. Now that 6 year old is all grown up and doesn't think poorly of her mother at all!
Temple Grandin, a woman who was diagnosed in the 1950's with having Autism and is now both a college professor in animal science and a world known speaker on the topic of Autism and Aspergers, gave a 90 minute talk, inspiring many and walking away with a standing ovation. Her story was featured in a movie titled appropriately, Temple Grandin, which won 7 Emmy awards. And she was one of Time magazine's top 100 people of the year in 2010. When she was signing books, she took time with Al and I to ask about Lars and what kind of therapy he was getting and how much and gave recommendations and praise all in the matter of 5 minutes. We were honored and thankful all at the same time.
In all, there were eight 90 minute sessions over two days.The information gathered was part theory, part experience, part scientific, part medical, part personal, part psychological, part opinion and part sacrifice. It was by no means all encompassing, but certainly informational. We took pages and pages of notes, with suggestions on adaptations to try at home and in the public, vitamins to consider, social stories to teach & plenty of sensory diet ideas. We purchased books to take home and read, and other music and DVD resources to use in our every day life.
It was a long and exhausting few days and I'm glad to be home. I know that the hassle of going, the money and time spent on the conference and the brain frying will be worth it if it helps Lars cope with life and helps our family cope with Lars.
Thanks for all the prayers and well wishes.
3 comments:
At least you learned Lars can throw back the brews. :)
Glad the conference was helpful for you all.
I laughed out loud at the beer story! That is hilarious! Atta boy, Lars ;) I'm so glad for you and Al-that you were able to experience this information and walk together through the conference. God is good@!
I just LOVE your blog : )
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