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The Chronicle Express
  • Learning to Ride the Roller Coaster: I'm Going to Live Forever

  • One of my greatest fears is that something is going to happen to me before my children grow up. I know that so many parents feel this way, but I am haunted by it at times.
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  • One of my greatest fears is that something is going to happen to me before my children grow up. I know that so many parents feel this way, but I am haunted by it at times.
    Katie would be okay. She would be sad, she would miss me,but she would move on, finish high school, go to college, move out on her own, get married, have children and do amazing things with her life.
    Tyler would not be okay. Tyler needs someone who will fight for him. Who would do that like I do? I know many people that would try: my husband, my parents, my brother and his wife, and my sister-in-law. I know they would do their best, but they wouldn't be me.
    I spend 90 percent of my free time thinking about Tyler and how to help him be successful. I live and breathe Autism. I am always thinking of the next step for him, planning his IEP goals, thinking of his "big" life transitions, and preparing him for events that haven't even happened yet.
    I spent over a year trying to get him services through the ARC. The state and OPWDD (Office of Persons With Developmental Disabilities) had to officially say that he has a developmental disability. When they said no, I challenged them. I had them do more evaluations on him and I took him to meet them face to face. I gathered more documentation. When they finally said he qualified, I felt like a weight had been lifted. Why, you wonder? Because that means that if something happens to me, there will be someone to help my family fight for Tyler like I do.
    No one wants to think about their mortality. I do though, I think about it quite often. I think of what would happen to my kids, especially Tyler. So I've decided that I'm just going to live forever.

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