Late Nov '18 - Update from Maryland
I wrote this a year ago. I told you that I thought we had a name for the stuff. The stuff that makes everyone confused. Self-injury, refusal to eat, aggression, property destruction, non-complaince for basic things like putting shoes on or answering questions (that he can answer)...or wear a seatbelt, or clothes...
All of these issues creeped back slowly. Each day something we noticed. Today he kicked someone. This day he ate lunch and dinner, but not breakfast. Today it took 5 mins to put his shoes on, no dinner, etc. You get the idea. It's not all or nothing. There is good moods and cooperation. It's not clear what is happening. it's a slow dissolve. This includes mood.
Mood seems to be dictating all of this. Is it bipolar? Maybe. Is this aggitated catatonia? Maybe. Does the label matter? Well, yes sort of. How do we treat if we don't know?
Here's the problem since day 1. Is there control? If there is control, we treat it as behavior. We analysis the behavior and come up with strategies.
But, if it's not. If it's more of a medical issue, we can still use behavior strategies, but we also need to address it medically. If so, how? Especially when no meds trialled over YEARS have resulted in nothing, but side effects that typically were useless at best and at worse could have killed him.
I am not the only one. There are parents, drs, OT, SLP, professionals that scratch their head regarding this topic every day around the globe. I don't think this is special. What is special is that we haven't solved it after years. We don't know. I was even told this week we may never know. Frustration grows inside of me. If I will never know...then how will we treat? Should we just pack up and go home? No, they say. You shouldn't do that.
Sigh.
But, I don't really like it here. I don't like the rules. I don't like most of the logic that is told me to me after the fact. I don't like being excluded in care. I don't like having to dissolve in front of grown adults to get what I think is best and logical.
I push myself to reason. I talk. I stifle back tears in anger in private. What I am rambling about is that I think I just want to go home with him.
I don't mind living here. I don't mind someone helping me take care of him. God only knows I am not ever going to be ready for the day the 3 of us are a family again in 1 house. But, I am so sick and tired of the rules and what feels like at times like a lack of courtesy to our feelings.
This is complex they explain.
NO KIDDING! I would never choose this if I felt I had any other choice.
Go home, I say to myself. Yes....yes. Go home. Go to work, hang out with you after school, give you a bath, put you to bed. Ok, yes. Let's do that. Because over there (at home), no one tells you how to do it. No one is watching your every move and never leaves you alone for one second. I am so tired of asking permission to spend time with my own child, tired of being told (not asked). I could go home, but to do what?
There are no answers yet.
BIG PICTURE UPDATE:
I am living out of a Ronald McDonald House in downtown Baltimore. I have been here since early Oct. I am a short-term leave from my teaching job (until January) and I continue to work on my real estate business to the best of my ability out-of-state.
My husband is in MN getting the mail, working his job, taking care of things. Our family will be together for xmas and then Scott will stay here until further notice. Basically we switch places.
Our son, Grant, has been inpatient since Oct 12, 2017. His last discharge date was set for Jan 15, 2019. I do not believe he will be home that date. He is on one med to help him sleep (I guess). He is doing an ABA treatment during the day with feeding therapy. Helping him to learn how to play with toys and working on academic tasks.
