Monday, July 30, 2012

Disneyland Paris

We dropped the kids off at camp and drove to Paris. The drive was very nice. The girls were wonderful in the car. Sarah had an I-pod to play with, and Jessica could watch a movie. Juergen and I could talk. It was nice. We walked around the shopping mall next to our hotel. Then we checked in. The hotel was clean and actually nice for the cheap price. I would gladly recommend it to anyone traveling to Paris on a budget. But Jessica would not sleep. Juergen and I were both so frustrated. She would not sleep until 3am. Then she woke up at 8am. So we should have just said no to Disneyland. I should have dropped Juergen and Sarah off at the park, and saved the 15 Euro parking fee, plus the 10 Euro dog kennel fee, and the 60 Euro entrance fee. But we wanted it to work. So we tried. And Jess was awful. She was just too tired to handle it. So Juergen and I took turns with Sarah in Disneyland and Jessica in the car. And we were angry and disappointed. But I could have driven to Monet’s garden in the North of Paris. I could have chosen a better direction considering Jessica’s condition. I was not very wise. I wanted it to work and I just didn't read the situation with open eyes. But I did get good pictures of Sarah in the park. And Sarah was so wonderful. She loved Disneyland. And Juergen and I both got to share good moments with her there. And Jessica was happy in the car. And the trip home was another very good talk with Juergen. So over all it was worth the trouble. I'm glad we did it. I just need to be willing to adjust my plans if Jessica can not fit into my plans. It would have been better for all of us to not push it. Autism is the pits, and we are just imperfect people trying the best we can to live a normal life. Considering the circumstances, I think we do OK. But it’s pretty hard sometimes. I can not lie, it really can be frustrating. But I love Jessica. And I totally love Juergen because he still made it awesome just be walking the hard road with me. And I never saw Sarah so patient and good before. She reminded me of Nicole. She really was awesome!

Thursday, April 19, 2012

Monday, April 16, 2012

I read this on CNN and I cried

A heart shattered by a glimpse into autism By Rob Gorski, Special to CNN updated 7:49 AM EDT, Mon April 16, 2012 HERE is the link Rob Gorski is father to three sons with autism and blogs at "Lost and Tired" Gorski encounters a homeless man brushing ice and snow off his windshield Homeless man reminds Gorksi of what could happen to his children Editor's note: Rob Gorski writes for "Lost and Tired," where he blogs about the reality of raising three boys on the autism spectrum. He and his wife, Lizze, have three boys, Gavin,12, Elliott, 6, and Emmett John, 3. Canton, Ohio (CNN) -- As the snow started falling, I drove to Giant Eagle to pick up some groceries. With a storm on the way, I needed to stock up on supplies in case we got snowed in. I pulled into the parking lot of the store and found a spot right in front of the entrance. I sat there for a few minutes, collecting what I needed to take in. As I reached over to the passenger seat to grab my wallet, I glanced over at the car next to me through the passenger window and saw three people who were loading their groceries into their car. I also saw a large man standing there, reaching over the hood of their car. He was wiping the snow and ice off the car's windshield with his bare hands. The owner of the vehicle looked at him with an icy stare that seemed to say, "How dare you touch my car?" She seemed disgusted just breathing the same air as the man cleaning her windshield. Instead of asking him to stop or giving him a few dollars, she quickly climbed into her car and gunned the car forward so fast the man was knocked back. A few seconds later, the man got up, walked to my car and knocked on my window. I hadn't even processed what I had just witnessed. Now he was coming over to me and I had no idea what to say. "Please, not now, I just want to get what I need and get home," I thought to myself. Where I live, it's common for people to approach you for money. I took a deep breath and started to open the door. The man opened it the rest of the way, being careful not to hit the car next to me. This man stood well over 6 feet and wore sweatpants, a light flannel shirt and boots that were left untied. It was roughly 20 degrees outside and he was clearly not dressed for the cold. In a rather abrupt voice, he broke the silence by asking, "Can I have your change?" I scooped up the change I had in the car and gave him everything I had, which was only $2.37. After handing him the money, I explained that I didn't have any more. Autism rates increasing, but why? CDC: 1 in 88 American kids has autism CDC: 1 in 88 kids has autism Study says 1 in 88 kids autistic "I'm cold and hungry. Can you take me to the shelter?" he asked. I noticed his hands. They were at his side but his fingers moved silently up and down, as though he was playing an invisible piano. He spoke with great difficulty -- in a stilted, mechanical fashion and his face showed no emotion. I never felt threatened, although he stood in my personal space about 1 or 2 feet in front of me. He would occasionally look in my direction, but never at me. Although he stood so close, he avoided eye contact. "Can you drive me to the shelter? Because it's warm there and they have food," he asked me again. "I'm homeless and very hungry," he said. "I'm not lying to you. If I lie to you than you might not help me." I really didn't know what to say, because I wasn't comfortable driving him anywhere. Then he asked me to buy him some food and gloves. I thought about what to say. I knew he would have a hard time understanding: I don't have any money. My family is struggling to survive each day. I was trying to figure out how to explain to him that I couldn't help, but I was at a loss for words. Then something happened that shook me to the core and completely broke my heart. As I was trying to tell him no, he looked me in the eyes. All of a sudden, I was looking at my oldest son. My wife and I have three boys with autism; the oldest is 12. Looking at the bare-handed man was like looking through some special window at my oldest son, 20 or 30 years from now. It was like being run over by a freight train. I was washed by a wave of clarity and my eyes and heart were now open to what was happening in front of me. Suddenly I was transformed from a person trying to avoid the whole situation into a parent, filled with compassion and understanding. He again asked me to buy him food because he was hungry and gloves because his hands were cold. Something about him was so familiar. Yes, I would buy him some food. I would never deny any of my children food if they were hungry. He smiled in my direction and took my hand without looking at me and led me into the store. His hands were cold, hardened and chapped. I noticed the looks people gave me as I walked with the bare-handed man into the grocery store. His clothes were old, beaten up and had a fowl odor. He asked me to buy him a gift card so he could buy food later, when he would be hungry again. So we walked over to the rack and he picked out a Giant Eagle gift card. I put $25 on the gift card. I gave him $25 in cash and asked him to please buy some gloves and a bus ride to the shelter. He asked for the receipt so "When the police stop me, I can prove I didn't steal this." He told me again that he wasn't lying. I told him I knew he wasn't. U.S. kids and autism Overall: 1 in 88 U.S. kids have autism; up 78% from 2002 Total: Estimated 1,000,000 children with autism Boys: 1 in 54; up 82% from 2002 Girls: 1 in 252; up 63% from 2002 Non-Hispanic white children: 1 in 83; up 70% from 2002 Non-Hispanic black children: 1 in 98; up 91% from 2002 Hispanic children: 1 in 127; up 110% from 2002 Symptoms typically apparent before age 3 Source: Centers for Disease Control and Prevention He turned to walk away, stopped and looked in my direction as if to say "Thank you," but didn't. What he did said more than a simple thank you. He showed me his eyes again for a brief moment before he turned around and left. I was beside myself with grief. How could someone I didn't know have such a profound effect on me? It took everything I had not to burst into tears. I just couldn't shake just how much the bare-handed man reminded me of my oldest son. Their eyes, mannerisms and even the way they speak were so similar. My son struggles with boundaries and personal space simply because he doesn't understand, not because he wants to be invasive. All I could think was, "How does this happen?" I was smacked in the face with reality. Related story: Parents of autistic children who "take nothing for granted" Someday I won't be here to take care of my children. What if this happens to them? What if they are the ones wiping off a windshield with their bare hands and almost being run over by someone who doesn't care? I can't let that happen. I won't let that happen. Since that cold February day in 2011, I have met the bare-handed man on a few more occasions. Along the way, I learned that his name is Tim and that he remembers me. Tim has shown me just how much work still needs to be done. I would like to think that my experience that day -- the way people treated Tim in that frozen parking lot -- was an isolated incident. Sadly, I know it's not. Things like this happen all the time. To this writer and father of three beautiful boys on the autism spectrum, this is simply unacceptable. We need to do what we can to help the world better understand both children and adults with autism. I'm terrified of what the future might hold for my children. I have witnessed how cruel and unforgiving the world can be to people who are perceived as different. It is an ugly reality but one I'm working to help change. Please help spread autism awareness, even if it's one person at a time. Remember that the autistic children of today will be the autistic adults of tomorrow. These people need and deserve our compassion, understanding and respect. Let's help to ensure that what happened to my friend Tim in the parking lot of the Giant Eagle doesn't have to happen to anyone else, ever again. The opinions expressed in this commentary are solely those of Rob Gorski.

Sunday, April 15, 2012