Today's daily event...a place to share

I am just his payee rep. No way we could get guardianship granted yet. Jeb is frustratingly able to still suppress at key moments - when I think of how he fooled his most recent psychiatrist - which he deliberately set out to do so- it’s beyond frustrating.

After they told him he could only earn $200. a month, he asked me what Medicaid was paying for currently. I have no idea if he plans to try to earn that much to make up the difference - which may be his thought. Jeb loves to work. Back before the psychosis became so severe and he was still able to work he would sign up for any overtime that was available.

If he would just work for the $200 it could possibly work. If he decides to replace Medicaid and has to work more than a couple of hours a week/ it will go bad.

There really is a possibility his relocation will work, as long as he doesn’t work so much that he gets stressed.

We would never have supported this attempt unless we thought he had a chance to succeed. There is a chance, but only if he keeps stress low.

Jeb does take needing his transplant meds very seriously.

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I think your plan is probably the only feasible plan to get the injections sooner. I try to order Jeb’s meds early each month to get some sort of buffer of meds available.

These days the insurance companies push back hard - BCBS is Jeb’s part D provider. When the last psychiatrist wanted a stronger med combo they fought back and wanted Jeb started on a cheaper tier med first. I do all that work to get him to a doctor and the insurance company insists on the cheaper med.

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So many obstacles, in our attempts to rescue our children. It’s beyond rediculous.

I’ve been thinking about your other son, and how he’s doing in his new role as monitor. I hope things are Ok for them both.

“I do all that work to get him to a doctor and the insurance company insists on the cheaper med.”

Don’t the insurance companies realize we are trying to keep them out of the hospital?

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Sooo frustrating!
It’s not about the money…?..I hopes doc pushed for what HE wants…he is the DR…and the insurance rep is paid to SAVE money.

We, living one county over from where our daughter lived before, have a pdoc that is convincing meds. He’s using clozaril AND invega orals. he is an older Doc and he’s willing, based on experience and pasted results, to do the combo. It seems to be working. Sometimes😕. Most defiantly nearly stable, half the time, which the hospitals were unable to do.

I feel for you. Please just keep pushing.

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His brother knows to not contact Jeb or try to be around him unless Jeb wants the contact. He let me know he will monitor the news up there - was so sweet of him. I had contacted my older son when I saw that a male pedestrian had been killed on a highway not far from where Jeb lives. He told me he was aware of the death and had already checked it out. He told me that he will be handling the local news up there. Brought tears to my eyes that he was already doing it.

Maybe it could have made a difference had Jeb been able to pick up that med straight from the doctor’s office - we will never know. The doctor and I worked for a week to get BCBS to approve what he felt was the more appropriate drug and we failed. A week is a long time in our world. A lucid moment can change in a heartbeat.

The health care companies “save” money and its a fake savings. Like the kidney transplant world. Many people “lose” their kidneys when the medicare 3 year coverage stops. They can’t afford immunosuppressives, they lose their new kidney and go back on medicare dialysis - which costs more each month than it would be to keep providing them with immunosuppressives in the first place.

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What a crock…

A day is a long time in our world let alone a week. Hang in there. You must be proud of your son who is helping. Take care

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Its the world we live in, extending the Medicare immunosuppressive coverage has been voted on several times and each time it fails. Initially, it will cost more, they say that’s what kills it in the voting,

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Yesterday - our daughter…(always comes up with a major need, each and every day) says:

“Since we are getting all caught up on my appointments, dr, eyeglasses, dentist etc, I want to have my front teeth filed down and straightened in front - just the 4 front ones.”

Mind you - her teeth are darn near STRAIGHT, only a tiny bit uneven across the bottom - and are beautiful.
Had to explain that she was asking for Cosmetic Surgery and that would probably cost nearly 8k

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You “get it”!

Headsets are a constant.

It’s kinda funny…he’s been more alert lately…and has started something new. He has the headsets on, he basically ignores everyone. He’s also planted in the kitchen (NOT his bedroom), so he has to at least be in the same room with family at various points throughout the day. Getting him to sit at the dinner table is an exercise in frustration.

The new thing?
He moves one side of the headset off of his ear.

That’s it…moves it so he can hear what we’re talking about.
That’s cool…I think…

I asked him why he was doing that? (Slightly concerned he thought we were talking about him in a negative way, and was feeling attacked)…he said what we talk about is fun, he wants to hear more. He just doesn’t know how to say that it hurts too much to talk, makes his brain feel very strained…so as long as he doesn’t have to talk, is it okay to just listen?

WHAT?

Okay…deal…
I’ll take it.

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I have good news today…I think?

Before Xmas, I began the process of seeking special ed services for our 20 year old daughter.

Pre-diagnosis (age 17) our Daughter quit high school(while living with mom). Academically, she’s at (was) 9th grade level. While in school she did struggled and had low grades, but was never even tested for SE classes. (Bio mom requested and then threw in the towel)

Anyway, the struggle I had was that
A - she’s 20
B - no previous diagnosis or need assessed.

Soooo, I asked and started the process. She had to do a 1 hr academic test that covered math and two other areas I’m not even sure were labeled.

Her results came back …math as the best subject. What??? It’s her most difficult subject (I’ve been told). Then came the results…a 1 percentile. One! 99 of a hundred “average” 20 years old would score better.

The other two subjects apparently didn’t achieve the 1 point. No wonder she walked out of adult ed after an hour. (She was 18 by now and able to ck out).

The school Psychologist said…she gave a very good effort and she can read very well…she struggles with comprehension of “what” she’s reading. More like 1 sentence is comprehended. Forgotten. Next sentence is read, comprehended, and forgotten. This validated a lot!

The good news is…she was accepted for special ed services. These services are available to MI and other diagnosis until age 26. There are life skills, community based training, job development and training, academic support if a GED is desired, pre-driving tests. Plus, they transport students to and from!

The social interaction will (should) be great for he - not to mention all the above!!!

Note: I was told several times that this is a case unlike they’ve had in my county before. Never had they even been asked, let alone accept someone of this age for services.

I am really excited…I wanted to share this with all of you and hope that someone else may be able to use this information.

My next major dilema: getting her onboard! She wants to go to the adult ed program she tried last year. Based on the result, she simply can’t do that and be successful? The good part is that she attended the initial meeting and agreed to follow theie academic recommendations…BUT that was only after she pushed to have the adult ed program included in the potential outcomes.

School Psy is presenting the info to us ( me and daughter) on March 9th. I am keeping my fingers crossed that she doesn’t deny this program moving forward.

That’s my exciting news!!! And my big dilemma. I can’t MAKE her do anything…but darn if I’m not trying to give her all the help she could use.

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That’s really good news and an extremely creative way to get services. I’m impressed by your efforts and happy for your family.

I like the idea of presenting this program as a step towards the adult ed she wants to be in. It’s so good you know you can help her, but not coerce her.

Perhaps a modest treat to look forward to after her first day, then each week? Something she likes that is not costly or harmful. Milk shake? Fresh juice? What does she like?

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We are right there with you in hope that she agrees. She will have more tools in her tool box to succeed anywhere she goes. The interaction will be good for her. Great news!

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My son recently asked if I could set him up for appointments with a psychologist. Took a bit to find someone we both felt might be a good fit. But he is scheduled for his first appointment next week.

I sure hope it goes well. His psychiatrist and I have both been encouraging him to consider this for some time.

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That’s good news; I hope he gets what he wants from the appointments.

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Son walked to town to attend appointment with me (on thur)
It was sunny and I asked him could he feel the warmth in the sun?

He replied “yes then said “it’s the most human I’ve felt in a long time “. (I’m banking that )

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That is so very hopeful…
and tenderly sweet.

Wow…what a special moment for you both!

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Our “Daily Event”…

something new…as everything seems to be a bit “new” right now for us since he became more alert.

He actually got out of his seat…
came to the living room…
stood there, smiled, and asked for our attention…

to ask for a new video game.

Okay…no biggie, kids ask for games right?
Not this one…and not for a long time.

Dad, of course, wanted to buy the game immediately, as it almost felt like we were speaking to a ghost…an apparition of our son appeared and talked to us like “old times”. Perhaps if this is “rewarded” he will continue?

BUT, it’s a game…and he really, really likes games. He usually pirates them…there’s nothing we can do about this except take his computer away. (That’s not happening, husband can’t stand to see his children suffer in any way.)

And yet…he wants to start school again.
He wants to return to reality.

So, I asked him if he started school this week, which would mean that he would need to respect his wake up alarm and accomplish his daily schedule (which he makes)… did he think a game at the end of the first week would be motivation enough to earn it? To put forth his best effort?

He was thrilled. Truly…he was excited to “show” that he can do it too. Just like older brother does.

Dad can wait a week.
Son can earn it.
The same thing brother does.

(He doesn’t want this game pirated as many options would not be available. Darn…:wink:)

That’s our “daily”.
Now, I have a busy weekend putting together elementary level math in a structure that represents a High School aged student.

More coffee…

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Wow! That’s exciting! Back to school! What is he going to wear😊?
He must be up to the challenge. I hope it goes well.

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