Sunday, January 12, 2014

After Research Volunteer Appointment

Today we had an appointment at Children's for a research study we are participating in.  The appointment went well and Jonathan finished a bit earlier than expected. After the appointment, we went to his baseball clinic. On the way there, I asked Jonathan if they had told him what the research was for and he said no. So I explained to him that it was to collect data about how his mind works now that he is so high functioning. So that grabbed his attention and we had a great conversation. I explained that this research is intended to study kids like him who are recovered or very close to being recovered from autism and compare their behaviors and responses to the evaluation of other children that are not as high functioning. And that the idea is to learn what can be done to help other children that need more help. And he liked that. I told him that today the ratio is 1in 50. That blew his mind. He told met that he had read somewhere that there are studies trying to find the cause. Then I mentioned that I am working with other parents of small kids with autism trying to guide them and help by sharing what I had done with him when he was little.  That shocked him and he said "that is so great of you mom". 

Then I asked him about how he feels. I reminded him of how he felt when I had first told him of his diagnosis and he said that he felt pretty good these days.  I asked him if he felt he needed to talk to a therapist and he said no.  I asked him if he knew of other kids with autism at school or outside and he said that he knew a few that were in the autism class, but no one in his class besides him. Then I asked him if he had to anyone, like Vanessa, and he said "not Vanessa.  I forgot, but I told my class". I asked him how that had happened and he told me that everyone was talking about something personal and his friend Christopher talked about his brother who had autism. I asked him what about it and he said that Christopher was annoyed with his brother because he behaved like an 8-year old. So I asked how old the brother was and he said 14. So I asked him why he told everyone about his autism and he said that his teacher was explaining about autism and he raised his hand...  He told me that he explained to them what I had told him, that it was like a crack on the road. And that he just needs to make a road around it. I can't believe he remembered !!!  He also told them that Albert Einstein had autism. He relates so much to that. I told him what his neurofeedback Dr had said to me when she did his fist brain map that his brain looked just like Albert Einstein's, and he was sooo thrilled!  He told me that at first he was worried and scared to tell his class, but he was fine afterwards. I asked if his friends treated him differently and he said no.  I asked if anyone bullied him and he said no.  I asked him how people and other teachers treated him and he said that they treated him really well, especially the teachers. So I told him that if anyone ever bullies him, he has to tell us. I don't want him to do anything crazy because he is very sensitive. 

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