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Living with Autism - Page: 11 of 12

We had monthly medication review meetings. These meetings were first very disturbing because I tried to get the KKI NBU behavior plan involved for his treatment. It had cost the insurance carrier over $350.000 and I was in total agreement with it. Rosewood Center was not willing and able to use it because of impossible rules and regulations that are not made for autistic individuals. I wanted them to get Alex completely off the medication, which was done at Sheppard Pratt Hospital. I had resistance in this respect at the beginning. Alex made it back to school in May 2003 before the operation. It was a total disaster from day one to three when they suspended him. An IEP was called at the school for the middle of June in order to get him into non-public school placement. I was able to get CSAAC (Community School for Autistic Adults and Children) in Rockville, Maryland on the phone into the meeting. Unfortunately, they never worked to do any services for Alex then and now.

Back to the medication meeting I was able to get the doctor into my corner of withdrawing Alex slowly but surely off his medication, which was completed into December of 2003. The behavior plan, which was copied from KKI I signed in September of 2003, which was never implemented. They had over 30 people working with Alex. They got like a 10 min instruction course by a person who did know anything about it and who did not care as well. Maybe it was the system of Rosewood Center. I was visiting Alex every day and spent about 50 hours a week, including writing, meetings, etc. I took public transportation, walking up to the place sometime 20 minutes from the metro and 20 minutes back again. The supervisors hated my guts. They made sure at the end that I could not visit him in his residence anymore. I saw too much. Then my visits were limited to a conference room, which was also cancelled after Alex took the plant apart. The supervisor did not like that. Alex loves to play with long strings and that was his substitute at times. After that, only the director and the doctors were dealing with me and of course his one on ones. By that time I had to meet Alex at the gym.

In the meantime, group homes did not work out. First CSAAC, than Grafton, also located in Rockville, Maryland, even though we thought there was a great chance with them. A meeting was organized for the KKI school. It would have really worked for Alex. That was torpedoed by social works at Rosewood Center. Finally, I got a call from the Youth In Transition School who wanted to serve Alex. I did love them for their effort, even though they where not experts in autism. I had to step pretty hard until October 2004 and stayed in our corner all the way. One thing with them I loved over everything is that they were there for Alex and have the most beautiful vibe and they tried hard.



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