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Question about BOOKS, Venting/Fussing


#1

This was originally a response to @Mom4Ever I'm just like you

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. :confounded:)

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.”

Any thoughts…suggestions?
Especially books.

Thanks.

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.

!


#2

I don’t have any book recommendations, but if someone else comes along with some ideas maybe you can find the books at the library so you won’t have to spend money?

Your son seems like an artistic fellow and CA has a lot of kid-friendly interactive museums like children’s art museums and discovery museums. Maybe going to something fun like that once in awhile would motivate him to get out and about? I took my brother and my kids to a big arcade the other weekend and even though he is 35 he had an absolute blast and keeps asking when we can go back. Lol We made sure to go early so it wasn’t too crowded.


#3

That’s what I was thinking!
Tried a few things in the area…found him sitting on the ground, or worse: wouldn’t get out of the car.

BUT…the local library?
He’s been going to those since he was a kid. They are quiet…predictable…and we can go when it’s not so crowded. I’m planning this in the next week or so.

Gardening Center was the last one we tried. They had seats, in the shade (selling patio furniture). After he understood that he could sit in the seats, he settled.

Again…when it’s almost empty.
He is finally “getting” that there are different times to go to places. You can avoid people.

In the past…pet stores have been good places. He can actually be having a hard day…but just wandering around a pet store is tolerable. When we were in KY, there was a pet store that had a chair. He bee lined for the chair when he was “done”.

This is LA…I bet there are several awesome bird stores I could find.
Thanks for the ideas!

S.


#4

Great idea! Maybe even the zoo or a petting zoo??


#5

He’s slightly germ phobic…
but…
birds…
and art.

You reminded me of his love of art.
There are fantastic art museums here…

Quiet too.
I’m excited…
this could work.

Something that gets us both out of this house. I’m beginning to think (after re-reading) that I’m going crazy from being cooped up so long.


#6

Your son could have felt overheated on your walk. That could have triggered a kind of panicky feeling. A lot of the psych meds warn about sun and heat exposure.

Also, if he has an MRI, be sure he gets some Valium. It should help him relax while “in the tube,” i.e. during the MRI. I have them frequently because I have MS, and it definitely makes the experience more tolerable.


#7

Another idea - what about some arts and crafts projects? Ceramic pottery shops and art supply stores sometimes offer DIY event nights. The groups are generally on the smaller side. It might be something fun to do with your son and might leave you with some nice souvenirs. :smiley:


#8

TRUE!!! It’s always in the 70’s here.
Dang…didn’t see that.

Thanks for the eye opener!

P.S. I see that Seroquel has heat warnings. He has always been sensitive to heat…and has always been on Seroquel.


#9

Dr. Amador has some YouTube videos you could watch for free.

My son was not dx until in 20s. But will tell you what I have learned is everyday tasks are more stressful to them than we imagine. Not to say they get a free pass. Can they do more? Physically probably yes. Mentally, maybe not.

I also have a mom with Alzheimer Dementia. My SZ son has mentioned his pdoc told him they are similar. As moms disease will progress she will lose executive function. This portion of the brain tells us how to perform a task. With SZ I fully believe (not a doc) that this executive function also gets impacted but in a different way. They know the steps unlike mom who will forget, but they get sidetracked with other “input”. So washing the dishes might take hours for them instead of minutes. When my son is talkative he explains some mental processes he goes through in everyday living that are truly fatiguing.

My son lives on his own. Believe it or not his home is reasonably clean but he goes about it in a rather odd way. In the end it gets done. Could you perhaps give him some responsibilities and a deadline like the trash has to be taken out everyday by 8pm and see how that goes rather than ask at random times. Structure and focus on the end result not so much how they get there seems to be less stressful.

As far as the testing I hope it goes well. My son seems to be resistant to meds. The lack of the success of the meds has pushed him towards non compliance. The pdoc suggested an MRI and he flatly refused saying he was not a science experiment.


#10

I’m almost through the Amador book. It definitely is more focused on adults and non compliant patients. It is a great tool. I purchased a used copy on Amazon that was in very good condition for about $15. It’s possible your psyD might have a copy you could borrow.

I understand how scary it is to be in a public place with a virtually immobile human being and no help. It happened to us, as well. We mom’s become more resourceful and stronger than we ever thought possible. I hope you find a book that suits your needs!


#11

@Squid

Squid,

I read through your posting carefully. I do have a question

What do they mean? Your beautiful son has an scz dx currently correct?

Do you have Dr E Torrey Fuller’s “Surviving Schizophrenia, A Family Manual”? While i do not recall how much or little he addresses childhood onset, surely the information you need the most is about schizophrenia itself?

Amador is great for opening up a path to communicate when our family members lack awareness of their illness. Sadly, lots of people have reported that their family member had insight at a younger age and lost it as the disease progressed. Many of the schizophrenias are progressive in nature. Meaning - they get worse.

Your observations of his struggles are right on with struggles my son experiences. If your son’s version is progressive and meds don’t relieve his symptoms, all of the things you are observing will intensify and “lengthen”. By lengthen I mean those recovery periods your son needs now will possibly be longer in the future. His sensitivities will increase, he will be able to deal with less and less stress.

Normal routines are one of my son’s biggest struggles. He will work towards getting himself on a day routine to have psychosis increase and swing his day and night all around. Sometimes its so bad, I don’t think there are days and nights in his world. His schedule turning upside down is usually the first sign we have of a worse time approaching. Sometimes the psychosis makes sleep impossible. Mine has learned several tricks, air conditioning making his bedroom super cold can help him catch a few hours of sleep. We installed a window ac unit in his bedroom so the rest of us didn’t have to dress in ski parkas.

It used to be if my son did some sort of activity - like your walk for example - it would take him a week to recover. These days if he does something as simple as that it can be 3 weeks of rest for him to recover.

What I am trying to say is that everything you are observing is part of his scz diagnosis. You have extra struggles with things like school and puberty to conquer, but really isn’t it all scz even if its a child?

They tell us at Family to Family we can reasonable expect our family members to do one thing a day. Have you taken NAMI Basics yet? That class is specifically for families with children and teens suffering brain disorders. Forgive me if you have posted that you have already taken the class. Hope


#12

Wow…great response.

I too, follow your posts.

Give me a bit…busy part of the morning, and …he’s awake…which is odd.
I’ll get back once he’s settled.

So much awesome info…
questions too.

You summed things up EXACTLY.
Looking forward to more conversation.

Thanks!!


#13

I’ll come back to rewrite later.