Okay, I'm going to finish up this entry today.
As my previous post suggested, after we returned home from Johns Hopkins life got traumatic for us as a family. Marcus was clearly in crisis. He collapsed into tantrums many times daily. The tantrums were different than we had seen in the past. Something would come over his face and you knew you were in it for a good 45 minutes. We tried everything we could think of to prevent getting there, but somehow we ended up in screaming, hitting, and destroying property. All of the strategies we had used in the past no longer worked. The look that came over Marcus's face was pretty frightening. You knew that "Marcus" was not there right now. Some other scary and violent person had come out and was going to be heard. At lucid times, Marcus would talk about feeling taken over and being scared when it happened. He hated when he slipped into this space. I knew when a tantrum was over because Marcus would collapse into sobbing tears saying he hated his life. It was heart wrenching. Often we all cried.
Morris and I took turns being home with him. I had to start going into work mid-August and then back all the way in September. Thank goodness my work does not have set hours other than meetings or class. Morris needed to get some time off for September but ended up getting laid off. They said he had too many family problems. We felt like prisoners who got short furloughs to go outside. We told no one.
Since he had no school to go to, the district sent in home tutors. What a disaster. First it took three weeks into the school year for a tutor to show up. When she did, she had no idea how to work with a child like Marcus. For example, her big science activity was to put a dandelion in food coloring!!! What?! This was a gifted 5th grader and that is a pre-school activity. People don't get that Tourette Syndrome is not a cognitive or intellectual disability but a neurological disorder. Needless to say, he ran circles around her. I complained after two days and they sent someone else out. He was at least at grade level.
Help did start to come our way, however. Because of the change in Marcus's diagnostic code from Other Health Impaired (OHI) to PDDNOI (a garbage can diagnosis), he became eligible for another level of services, including the Waiver program. We had a social worker come three days a week for several hours to help us develop new tools to work with Marcus. She got a show for sure, but she was an incredible help. At first it was my worst nightmare to have someone come over. We were used to isolation and not telling anyone what was going on. She turned us on to a behavior program called 123 Magic that I thought would never work, but darned if it didn't! The waiver social worker was a godsend as well. Marcus would be eligible for skill-building services and even some respite for us. It took a long time to get going though and we ended up with Marcus in residential placement before any of it kicked in. But she came with me on the big day of the CSE meeting where we got residential placement. Going to residential will be another story.
It's hard to describe what these few months were like. I'd had traumatic experiences before with my son Eric when he was a teenager, but nothing prepared me for this. I simply went numb. I put one foot in front of the other and walked through my life dead to emotion. I don't think I would have survived if I'd let my emotional turmoil come to the surface. I'm terrible at asking for help and so I didn't. I'm supposed to be able to handle all this, right? I'm the capable one. I suppose I "handled it", just not very well.
No comments:
Post a Comment