When Sam was very newly diagnosed, we made the decision to move to a different county and district. When we landed in our new county, I had to pick a new developmental disability case manager. At that time, DD services would send a fax with a picture and some info of 3 people and let you pick which one you thought was best. The pictures were nothing but a black blur because that's all that showed up on the fax. The information was just a resume boiled down to two sentences. In the end, I pretty much went "eeny, meeny, miny, mo." Good thing I'm a lucky picker.
At that point, I knew nothing about how to get what Sam needed and Sam needed A LOT!!!!! We had not yet hit rock bottom, but our household was definitely on the path to utter despair. I had no idea what I was doing or how to get Sam what he needed, but Chris did. One day she called me and said "You need to get..." and named several kinds of documentation which she told me to get to her office ASAP. I covered the entire east of 71 side of Cincinnati chasing down what she requested and dropped it off at her office. She told me shortly afterward, "Sam has a waiver." I said "Fantastic!!! What is it?" She told me that it was a special form of medicaid that allowed Sam to receive additional medical benefits based on his disability instead of our income. I stared at her. I had no clue what that meant. She explained that we could use it for therapies and equipment not covered by insurance. We had stopped therapies after our insurance company said not only were they not going to pay $3000 in billed services, but they also wanted over $5000 they had already paid back. I asked her, "Does this mean we can go back for speech therapy?" When she said yes, I cried.
Then she had me sign up for every kind of waiting list you can possibly be on when you have autism. I thought it was silly at the time, but now I understand that he needed to get on those lists at 4 if I had any hope of him accessing those opportunities by adulthood. Yep, the waiting lists are really that long. The most important waiting list was for an in home behavioral intervention team with an 18 month waiting list.
Over the next year, things got worse at home. Sam became more destructive. He ran faster, further and more often. By the next summer, I could rarely leave the house with Sam. When I did, the entire trip was dictated by Sam's level of cooperation which fluctuated unpredictably. He couldn't tolerate even the possiblity of interacting with people. He had no impulse control. The week that Sam provided me with the opportunity to learn that our county does in fact, have a helicopter for search and rescue purposes, I asked Chris how much longer we had to wait for the behavior team. She said I should have told her sooner. She immediately submitted us as an emergency situation which popped us to the top of the list six months early. That was a pivotal moment in our autism journey.
Chris was with us back in the day when Sam was so out of control, I didn't even know if I could safely keep him living in the same house with us. He was five and I'm not lazy. It was really just that bad for him and his siblings. Looking back, I think Chris suspected that was a distinct possibility. If it weren't for Chris, I would never have been able to turn that around. I would never have met all those amazing people I told you about during my autism awareness string in April. I would never have helped Sam learn to communicate. I would never have discovered that I wanted to help other children communicate. If it weren't for Chris, I wouldn't have this picture that I took tonight of my high school boy at his first home football game as if he had never been anything but a sweet young man who enjoys Friday night lights....just like any other teenager.
Chris, thank you so much for teaching me how to advocate for my son. It was truly the most important gift any person could ever give me.
No comments:
Post a Comment