autism, chris, deafness, residency

Change is hard

Upon a time of turmoil this Amy Grant song lifted me up through tears of grief yet tears of cleansing, and it is doing it again.

Words by Brown Bannister, Chris Christian, Amy Grant
From the album Never Alone

I had laid some mighty plans
Thought I held them in my hands
Then my world began to crumble all away
I tried to build it back again
I couldn’t bear to see it end
How I hurt to know You wanted it that way

[Chorus:]
And I’m so glad, glad to find the reason
That I’m happy-sad that You’ve torn it all away
And I’m so glad, though it hurts to know I’m leaving
Everything I ever thought that I would be
Once I held it in my hand
It was a kingdom made of sand
But now you’ve blown it all away
I can’t believe that I can say that I’m glad

Long before my plans were made
I know a master plan was laid
With a power that superceded my control
And if that truth could pierce my heart
I wouldn’t wander from the start
Trying desperately to make it on my own

What a timely song! I just heard it by chance on Pandora Radio (I have it set to play Amy Grant & similar artists) and I was just like, wow, that was MY song in the winter/spring of 81 when I went through some really really hard stuff —

Anyway, we’re about to go through some changes with Chris that aren’t exactly unexpected, but still hard to go through when you want to go AROUND, UNDER, BYPASS TOTALLY. I don’t know what the future brings, and things surely aren’t going as we’d planned.

Chris’s official discharge date was Oct. 1, but they gave more time after that. We saw some homes last week, which was kind of later than I think everyone planned as we had our out of town trip, and I was also ill either before or after that (can’t recall now). Then there’s been other things going on with work and others’ illness and just stuff going on that only gave us a few days to really think of what to do after we saw the homes.

We kind of liked one a lot, but probably not enough to take a chance on it. We are so burned by what happened — him being asked to leave, as merited as it may be — that it’s hard to “take a chance” on a new place.

So we made the decision that he will stay at his grandma’s & grandpa’s (paternal) most of the time at this point, with us helping a lot as well as Rog’s sister too some. We do have a pretty nice local home that doesn’t have any openings now that we may be considering as well. There is something we are awaiting that will help a lot, and it’s called I/O Waiver.  That will give us way more options for watching him at home/family’s. We can even get property for him then and hire caregivers so he could have his own home but we would still be in charge. Our county, however, in 2002 quoted that this could be somewhere around a 20 year wait.

What is heartbreaking is that he was on the “waiver list” for this waiver, and they lost his place, in 1996. We didn’t discover until 2002 that his place on the list had been lost, and I had no proof of his placement ON the list — could find no paperwork. Actually I want to tear my file cabinets apart AGAIN and see if I can find anything. 6 years on the list lost – maybe that would be the difference where he could have the help SOON. I had 2 huge notebooks I compiled on his autism topics back in 1997 – I can’t remember if I searched through those back in 2002 when we found this out but I will search now.

We just want him to be healthy, happy, and well taken care of. His health is SO good now — I’m a little nervous with losing all the hands-on supervision he has now and the strict routine, that especially right now when we don’t have the help lined up, and CAN’T really until he gets home — he can’t even be evaluated for Medicaid home health care until he’s home, and will have to wait a while while it’s lined up — that he will be getting into more food he shouldn’t have and not have the routine he needs. However, Gayle is VERY good at routines, and I just have to trust she’ll be able to do it for a while with our help until we see what we’re going to do next. Right now without the I/O waiver we hopefully should get Medicaid home aides for 14 hours a week, and then after that he should be able to get Health Chek (up to 56 hours a week) once that is approved. Then that lasts until he’s 21 (only 2+ years away). Then to get that much help still he’s going to need the I/O Waiver. There is another waiver too called the Home Care Waiver, and it was explained to me that you get some home health with that but not as much, but you get more home remod funds and stuff like that.

This home care site was just given to me today and I’m going to go now and read more about what will help Chris that we can get for him.

 

 

residency, waivers

mind-boggling

——————————————————————————–
Time: Wednesday, 3/9/2005 8:31:31 PM (#66445)
User: dori

Comments: hello – thanks for prayers and thoughts! After discussing, we decided not to do this at this time, but to really start spending some time researching facilities in this area so that we are more prepared when they call again (which they will – Chris will keep this top spot and when the next opening occurs they call us back). We just would feel more comfortable with more researching being done in the placement – 2 days just isn’t long enough to decide. I also am concerned with what I’m reading about Governor Taft cutting funding to ICFMR facilities (which is what this was) and want to learn more about how the private facilities are funded. I wanted to post a site about it, but the screen froze loading the pdf, so I’ll be back with it….

dori, very sick (ugh) and not quite up to all this today…. please continue to pray for us!


(2020 these links are no longer valid)  Chris got the I/O Waiver in 2011.  Ryan got the I/O waiver in 2018.

Comments: http://www.lakemrdd.org/pdf%20docs/petitiontopreservechoice.pdf

http://www.lakemrdd.org/pdf%20docs/icfmr_morethanchoice_updated15feb.pdf

I can’t believe I didn’t know about this….

dori

——————————————————————————–
Time: Wednesday, 3/9/2005 8:44:04 PM (#66447)
User: dori

Comments: I agree with having a waiver program in place for home services. We are on a waiting list for this (and were told last year that the wait may be 20 years). We were on the wait list also for the ICFMRs, which is the type of opening that came up today. We were on both lists for the same amount of time (3 years). So while we would love to have the first kind of waiver (40 hours of help in the home per week instead of the 14 we have now), the wait is ridiculous, and to think of this going through and adding ALL the people on the second list that are in ICFMRs now is just mind-boggling!

 

autism, college, medications, music, Pans/Pandas, residency, sleep, waiver placement lists, waivers, weight

another old copied post…. things are not good :(

 

 

User: dori

Comments: feel like the straw that broke the camel’s back just happened – my aide just called and asked if I thought Chris would hit her today how do i know… – I said I didn’t know, he’s mostly hitting himself, but that he had hit me some especially on Saturday. She said she’s not coming today and that she’s going to call her office and explain how much he’s hitting her (he did hit her a lot on Thursday – she had a sore arm from it) and whether they still want her to come back – what do you think will happen?

2020 – yet another pans/pandas note… is that what this aggression was from??

I told Rog if I don’t have an aide I think we will have to have him go live somewhere else. We may do it this week. I’m so depressed. I can’t do this with no help. My mom did help me yesterday but he was hitting her and pushing her and she’s only 5’4″ and about 105 pounds so she can’t take too much -she’s also 61. My MIL isn’t even coming around to watch him anymore really – she’s pretty sick right now.

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