Several questions, then some rambling of my thoughts/worries:
Does Amador’s book touch on children with scz? OR is it strictly the “I’m not sick” portion? What other books have you found that are helpful on this journey? Books that relate to child onset more than adult onset please. I am asking about this book…as money is tight, and I think I can afford ONE book this next pay period. Which one?
My main question…our son is 14 and is aware that he has scz and requires meds. VERY med compliant…better than me (His has to be taken as specific times, if it wasn’t for alarms I would continually forget!!! He hears the alarms, comes and finds me, and then goes to take his meds. )
Right now, we’re not putting any pressure on him. I feel guilty, as I think he can do more…but pdoc and husband want him to “not stress”. They do not pressure him, or ask things of him. I do. I not only respect, but value our pdoc team…and they seem to want him…ummm, swaddled? He is certainly “protected”.
More accurately…I pressure him for reasonable things. Right now, I can arbitrarily tell him to do something…he may argue, claim he can’t move (his joints hurt) or something…there is a point where even I know I can’t push this further…but I can push him farther than anyone else can. Not without risk, and most certainly not without consequences.
Interrupt his world to ask him to take out the trash? I can do it. He may glare, but he won’t push it too far as he is UBER concerned that I am happy. His delusional belief structure is that “they” are going to kill me or take me away. When he is “clear”, this belief continues, but distorts into: that I might “leave the family” because of…and he can list a million reasons that don’t make sense, but are close to reasonable…enough reason to show us that he gives this subject waaaay too much thought. So, if taking out the trash makes me happy, and I tell him how happy it makes me…then he will do it. He will also respond something to the effect of: “If I take out the trash, then you won’t be tired or feel that you are burdened with me, and you won’t leave.” I have NEVER mentioned, discussed or talked about leaving. Make sense? In our world, it does.
Right now: I can’t get a normal routine established to add more things in his day, as his sleep/wake schedule changes the very minute “stress” increases.
Here is an example from one month ago. I didn’t post at the time about this…today, I need to vent:
I encouraged him to take a walk with me. He was willing. We decided to walk to our older boys High School and meet him after school. Long story short, he struggled and collapsed.
The entire time, he walked consistently 4 steps behind me (think momma duck with a large teenager walking behind, literally BEHIND). He began sweating profusely, flushed, and entered a glazed/flat expression (the same expression which indicates he is hearing things.) A few more feet, and he sat down on the pavement. He said he couldn’t get any further, had sweat marks heavy on his tshirt, and was shaking from head to toe. STILL GLAZED. So…encouraged him to walk while holding on to my arm, with suggestions as to how posture can help, let’s find a bench and take a break…etc. He continued to sit down, usually on the pavement again and again, until he couldn’t get up anymore.
There were a lot of teenagers on the street at the time, pretty girls included…and his misery was such that they didn’t matter to him. He sat down in the middle of the group at the bus stop. THEY of course, moved away to another waiting area. He still sat…and waited…for what? I don’t know. He just collapsed.
I was honestly scared, as I could only stand there, on the street next to our boy. I couldn’t carry him, move him, help him…I could only stand guard on the street. (A street in LA, with, I’m not kidding, a half dozen other mentally unstable homeless sitting/pacing/mumbling in the immediate area as well.)
I will never walk again without a backup plan. We were fortunate…I was able to text husband who was on his way home from work. He drove by and was able to pick us up. I noticed that he moved slowly to the car (not drama or acting…he was out of it…) and was literally wiped out for at least a week afterwards. He refuses to walk now. Dad said he did not see me, did not get the text, just happened to swing by to pick up older boy, and saw his younger son sitting on the very busy street, with a crowd of people standing away from him., and someone standing behind like a guard (that was me, by the tree, behind him).
This was the result of my bright idea to encourage outside activity. I honestly thought a walk through our neighborhood would be as peaceful and uplifting for him as I experience it to be. There are so many flowering plants here, the weather is perfect…the community encourages walking.
He is scheduled for Neuropsych Eval in March. Husband wants ALL THE TESTS. Pdoc wants ALL THE TESTS…including testing outside the typical scope. (MRI, etc.) I don’t know how our boy will respond, but I do know what the testing will involve. No matter how many people tell me that the testing drs are “kind” and “limit the stress” involved…I know our boy. This is going to be hell. (Of course, I have said nothing about my concerns to our boy. I presented the testing with the script that the pdoc and other parents recommended.)
Husband and pdoc are telling me to wait until testing…“we’ll know more”…and I do recognize that they too are concerned with how this will go. They acknowledge that I am the literal front line with our boy. Dad has taken a step back since son became suicidal in KY. Pdoc wants to keep the family supported as much as possible…but also get us “in a legal position to make decisions for him after age of 18.”
This is a picture of him sitting down. It was over 2 years ago, so visualize more weight, and a taller boy who sits on the ground now. Getting up and down is hard for him. He does this anywhere and at the most unexpected times…the store, a drs office, street, parking lot…etc. This photo was at the Middle School for his brothers special exam day. The stress…ended up being hours of agony. That day he became argumentative and nasty. (Odd for him, misery for us.) Second picture is an attempt to show how much he has physically grown. I have more pictures of him asleep than anything else it seems.