Category: chris

autism, chris, deafness, residency, sleep, waiver placement lists, waivers

The brick wall

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Getting Chris into the placement he needs (National Deaf Academy, which will meet his psychiatric, physical, deafness, and autism needs) has proven to be quite a challenge.

(2020 – thank goodness, in 2014 they were closed for abuse per my reading)

Chris recently underwent a med change at our local hospital due to increased agitation and other situations. However, the next step necessary to complete this med change is admission into a psychiatric stabilization unit and/or a nursing facility with a psychiatric lock-down stabilization unit. The usual pattern is that the individual gets the med change, has the psychiatric stay in the middle, and then after 30 days would be admitted into a residential center to live or go home if that’s appropriate. Now, Christopher has a likely residential center, that he can be admitted to in 30 days. It’s sounds pretty good, although it’s not perfect, and doesn’t have the extra autism and deafness therapies that Florida will provide. But we believe it will provide Christopher with a structured environment with professionals to meet his physical and medical and psychological needs.

It was very hard to come to this conclusion that Chris needs to go back into residency, but with his needs it had become apparent, and with a placement available, we decided to go ahead and pursue. However, with his needing a med change, we were awaiting an intermediate stay at a psychiatric center, and one could not be found in 5 days of our hospital stay. The social workers tried endlessly to place him but due to his age (either too old or two young) or his deafness or his being non-verbal, no one would accept him. This is in all kinds of centers in probably a 200 mile radius from here.

(2020 note – this was found to not be uncommon.  We tried again in 2017 (Chris had medical/neurological issues again causing him struggles with agitation, and then again with his brother in 2018, who had his own neurological/medical issues where we could not find placement.  Ryan got I/O waiver almost immediately after.  We have also had friends unable to get residential placement to assist in medication adjustments.  

We were floored, completely floored. We also inquired about how we can get funding for him to go right now to the Florida center. There is no funding known for it, though I have not stopped looking. The center says we have to pay for it with MRDD or Mentor Health Board moneys – we check with mental health board and they say MRDD should pay – and MRDD says they don’t have the funds for that at this point – we believe we need his I/O waiver to pay for it, which may come at some distant date – 10-15-20 years from now?

(2020, again so glad he did not go to the Florida center!)

Continue reading “The brick wall” →

children, chris, colleen, reflections, Ryan

8 years old – thoughts

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chrisbed 552d Photo268

As Ryan (here eating fries when we briefly stopped at the park a few weeks ago) was climbing on my lap today, I started thinking about how soon that may be getting harder for him to do.  He is a tall boy, still skinny, and can still fit upon my lap even though it’s a little poky in places :D.  I have to remember to appreciate that and cherish a little boy on my lap, as the years go so fast.

I remember when Chris (above, left) crawled into our laps and in our bed every night to sleep.  He loved to be held and would just laugh and laugh.  He loved to lay down with his dad and play tickle games and play with his toys. 

Colleen wasn’t so much a lap person but she loved to sit with us, especially her dad, and play her animal games.  She did that a lot at age eight, and had a game called the cows that she played with her dad about imaginary animals and their conversations.

Now Ryan is over eight years old, and where is the time going?  It just seems the childhood ages are going past me – Chris going to be 20, Colleen’s 16th birthday is in 11 days, and they’re growing up before my eyes.

 

autism, chris, deafness, residency

Change is hard

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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.

 

 

autism, chris, college, residency, transcription, travel

Completely overwhelmed, but still soothed by nature’s glory

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Originally uploaded by

criscollrj

I’ve noticed that nature greatly soothes me as well as prayer. And also just being with family and laughing.

But things are crazy, and I just have never any time for blogging, etc. I often think lately that I’d just like to totally quit working so I can catch up on pretty much everything and spend more time just hanging out with my kids and hubby. But I love my work, and right now it’s necessary. So I continue to get up at 3 to type and have toothpicks holding my eyes open most of the day —

  • 97 minutes to get out, proofed, by tonight – I have 6 minutes done – so why am I here? I’ll be quick!
  • Chris is officially discharged from his group home Oct. 1. However, they’re still keeping him while they look for more homes for him. I believe he’ll be home here and G & C along with us will share his care.
  • Chris’s school is going very well and they have him in a new language program that is helping him a lot!
  • We are unable to get Chris’s waiver yet as there’s still a huge huge wait list – like 15 more years maybe.
  • Ryan has a new teacher this year as well as a new autism coordinator in his school. He is doing well but won’t eat lunch or wear his hearing aides – sigh. Sunchips are my friend . . .
  • Colleen is working hard at school and enjoys times with her friends –
  • They’re all growing up so fast.
  • I am seriously seriously considering going back to school in the spring to become a speech therapist, and need to apply for my financial aid. This of course means a little cut in my work but I need to try.
  • We’re going back to the Maryland mountains Tuesday as part of our business trip and I’m going to meet my good friend Pat from a transcription board I’m on!

 

chris, colleen, life, organizing, Ryan

Graciously accepting help

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childrenautism
I was just thinking this morning that this is one of the lessons I’ve had to learn. I’ve been thinking about, what are the things I’ve had to learn in this walk we’ve been on in life? Graciously accepting help, though I’ve not yet gotten very good as ASKING for help; accepting my limitations; and not being a perfectionist. There’s probably more, but that’s a start.

Years ago I made this web site: https://criscollrj.com/cleaning.html . Beth D. if you’re reading, I’m sure you remember helping me with this way back on Geocities in ’97!!! All the tables and everything for HTML coding. But I felt so guilty that I could not follow it. And I did not want to ask for help.
Continue reading “Graciously accepting help” →

chris, life, work, writing

Missing writing, missing an important part of me!

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I need to take more time to write here. I do feel my life is kind of taking on a pace all of its own that half the time I feel I have no control over!!!

First of all, Chris is doing great — dsc00342 We went out to eat with him today and he was very happy. Ryan also had a plate of spaghetti dsc00343

Continue reading “Missing writing, missing an important part of me!” →

chris, Christmas, life

No time!

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So what’s taking my time? All kinds of things!

  • working
  • trying to clean house
  • learning the Dave Ramsey method of financing
  • occasionally exercising, but eating too much candy
  • Seeing Chris!
  • Overseeing Colleen & Ryan
  • Checking out facebook (my user name is dori typesalot) and finding old friends on there.
  • what~2020 – dori typesalot?  that’s hilarious!!!  Wonder how long that lasted?
  • Cooking homecooked meals to save money!
  • Planning Christmas a bit ahead of time
  • Doing Chris’s guardianship papers for him turning 18
  • Suffering from colds – like two in a row – yuck!
  • Watching with amazement the leaves turn red and then all of the sudden today they’re all off the trees…
  • Enjoying our first snow earlier this week.

Happy Thanksgiving, if I’m not back on before that, and keep checking the Flickr pics on the right!  (2020, yeah that’s outdated too — leaving it there anyway, as I had that Flickr viewer for YEARS)

chris, dogs and cats, residency, Ryan

Where’s Chris? At the blue house…

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1-26-03 005

Originally uploaded by

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Chris has been at his new home over a month now. It’s going very well! It’s odd though to have him gone. I know he’s getting a lot of outings, is on a very good routine, and with the low-fat diet he’s on he’s lost 11 pounds!

Ryan has been asking about him and should be seeing him tonight (we’re going to take him to the chiropractor with us – his first car ride with us!) Ryan says, “Where’s Chris? At the Blue house.” Then he said, “Where’s Doreen? No Doreen.”

We are very busy still – the dog didn’t work out – we had to take him back to a home last Saturday. He was too rough with Ryan. If you look at that one picture of Ryan with the towel on his head, he was afraid of the dog.

I’ve been typing a lot again, and trying to clean house.

I need to update here more!