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Living with Autism - Page: 7 of 12

It was a long weekend again. Monday was Martin Luther King Holiday. It reminded me what we had to go through on that holiday with the earthquake back in Los Angeles in 1994. After that very difficult weekend, alone again, especially dealing with our neighbors as well, calling the police on us, coming to the door calling me out of my name, not understanding Alex at all, Alex started to act up very bad. That was January 20, 2003. On Tuesday, January 21st, it carried over and he had a very hard day, jumping into traffic, showing off, screaming. The bus ride to school was very hard. The driver did not even want to take him, and finally did so only after I insisted. Alex had a hard day at school and difficult returning home on the school bus as well. Once at home, it continued. Alex was a danger to himself and others. We had to call emergency. Police came and Alex and I were taken back to Johns-Hopkins ER. We desperately needed help. Adrienne, his mom, was not ready anymore to take Alex back home

The neighbors had no understanding for him and weren´t tolerant at all. My situation was completely desperate itself as well as helpless for my child. The only thing I could do was be there for him in the ER. Alex, having problems with changes as it is, could not get used to the new the apartment in Baltimore. At this time we decided to find Alex a group home, but they are not available just like that. I had no experience in this regard at the time and being new in area did not help at all. But we needed help desperately.

At the ER the doctor told us, in order to obtain help for Alex we had to relinquish custody of our son in order to obtain the healthcare we were seeking. Of course, I was not ready to do this at all. We, his parents, knowing our son better than anybody, him being non-verbal, cannot speak for himself at all. With all the changes he has to go through, his parents stepping out of his life to leave him alone would hurt him even more. I could never do this. Thank God that Governor Robert Ehrlich of Maryland, when he took office, signed an executive order on January 17, 2003 regarding Custody Relinquishment and Access to Services for Children dealing with this matter. I testified regarding this in June 2003 to the state commission and in September of 2003 I met members of the USA congress and senate regarding this issue in Washington, DC. This helped us to keep at least some control, guardianship and being his advocates in his life.

But the system did not understand this and do not understand this and giving parents a real disrespect and misunderstanding. The disability business, yes business, is about money out there. It is economics, but Alex does not understand this at all. He just wants love, structure, a good vibe and understanding what he tries to communicate and being misunderstood, because he not able to verbally tell you.



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