About Me

On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.

Monday, March 28, 2016

Lunch Disaster


We started ABA therapy a couple weeks ago. After waiting over a year to get these services again, I was overjoyed to start. I've really been struggling trying to step back and stay out of the way so Jayen can build rapport with the new tutors and understand that he has to listen and do what is asked of him. Today was one of the most difficult days I think both Jayen and I have had. Lunch time didn't go so well the last time this therapist was here either. I really wanted to make sure they all understood his feeding issues and aversions. I guess I did not stress them enough. This feeding session had been going on for nearly 30-45 minutes before I even started recording the session. The tutor told Jayen he couldn't have mom, even though he was screaming for me, until he took a bite. After refusing again, he changed to not having mom until his food was all gone, then once again changed it to not having mom until his session was over at 2:30. In the meantime I was sitting on the other side of our counter crying and holding myself back. I wanted Jayen to understand that the tutor was in charge, but I was so disappointed in how the tutor was handling the situation.
I keep thinking about how he was imprisoned to the chair. He was forced to stay there against his will. I know I mentioned over and over again about his feeding issues and that he needed to be watched so he doesn't choke. There was no watching him. There was no way for him to know if Jayen was choking. He didn't care. I'm so upset that he took the food away from him but continued to shout at him to finish his food. I'm livid that he decided to take off my son's clothing without consulting me first. I'm beyond upset that this has to be his memory. The next time we try to eat he is going to be upset before we even start. The relationship between Jayen and his tutor is now non-existent and can't be repaired.
I have sent this video on to the tutor's boss and am waiting for her response.
After replaying this video and the moment in my head over and over again I am so disappointed I didn't stop this much sooner. I originally took the video to show to the BCBA to help us all figure out a better way to handle this. I just can't believe I let this happen. I will not be allowing this to happen again. I'm so sorry Jayen. I'm so sorry for sitting back in silence while you were screaming for me. I'm so sorry I allowed this to happen while I watched. I promise to step in immediately when I know that this shouldn't be happening.

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