Dec 2018 - Update from Maryland

I am in Maryland until Jan 1. I return to my regular positions in MN in terms of a real life of career, grocery shopping, cleaning, etc.

Husband comes out here for the holidays and will stay for the remainder of G's intake.

Grant appears to be 110% done with this place. He cries until he is promised he can go home or get a toy (that they lost) or will get to ride a bus. I think it's a combo of boredom and wonderment of how much longer he has to be in what I am now calling jail. I don't blame him. I can't explain why he has to stay and how much longer because we don't know.

G is off of nearly all the meds w/ the agreement from his dr's that this is ok because he is back to the ECT. He started again on 12/12. He has his next one on 12/21. He has another EEG on 12/19. As you can see they are going very slow, watching to see if any of the previous issues come back. If they do see any issues; ECT will be terminated.

We said what is plan B? We were told there is not one. They claim they have tried everything and so I guess we pack our bags.

This is hard because despite various concerns and frustrations with the treatment center. All of his protocols have fallen apart.

So when people say - is he is better? What is better? This is a loaded question. Simple answer. He appears more mature. He is taller and looks healthy. He doesn't aggress at people like he had in 2016, but he will suddenly attack. I got kicked in the chest so hard 2 days ago he partially "knocked out my breath". I simply moved away and he didn't aggress at the staff member nor did he continue to come after me. He will do that sometimes and we don't know what provokes it.

He still has SIBS (hits himself).

He is moody and fussy. But, nothing extreme like the past.

He is 2 to 1 (meaning 2 adults to 1 child) when he moves around the unit for safety reasons. Probably unnecessary right now, but better safe than sorry considering he has fallen off of toilets and onto his face while walking without anyone catching him in the past.

He currently is back to feeding therapy. He sits in a Rifton chair (adult high chair). Someone stands behind him to block him from hitting. And the feeding therapist feeds him purees. I guess this week they are going to start training behavior team and us (parents) so we can fade them back out.

I don't know what is going on with his education piece. Sounds like it has all fallen apart. Communication is dismissal. If I want to know anything I have to ask. No one is calling or sharing anything unless I reach out. A lot of assumptions are made. I am not allowed on the unit until 4 pm so I don't see anything. They don't care to change that despite all of the issues. It's a flat out "no" and now that they know I am annoyed with this lack of communication; we are meeting on Thurs. BUT, it's with everyone. It could just be a quick phone call.... (insert eye roll).... It's always one extreme or the other.

They are working on something with toys. They haven't shared what they are doing exactly and why he can't access them more frequently or the way he wants to. I have directly asked for answers and I have been pushed off to social work (of all depts). I won't know the answer until Thurs. Until then he cries for something to do. I only have a laptop. Sometimes he wants to paint. Their lack of understanding his pt of view is disturbing. Their lack of explaining why they do what they do in the recent past is upsetting (on this topic alone). It hasn't always been like this.

I was reminded at our last meeting that we are have free choice to leave, but as they know, we can't try ECT at home. We must do it at Hopkins. So if you are wondering why we stay; this is the only reason. When the experiment is done. We come home. We don't have staff set up. They haven't made the videos they promised. If this doesn't work out, we are right back to where we were. On the other hand, if ECT is effective for G, then none of these developed protocols are necessary. So you can see there are 2 extremes happening right now. Everyone is hopeful that ECT is the answer (sans meds).

Much love and Happy Holidays,