Seems fitting to attend a great barbecue the week before school!

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Sometimes it’s challenging to get through the summer easily trying to keep two rambunctious boys happy and safe in the heat.  But all in all I think we all accomplished this this summer.  We have worked as a team – Chris stays at his paternal grandparents’ still (while we await, seek, and research the appropriate placement) and Roger stays over there a lot to watch him.  Chris is very astute and is trying his best to learn the ways of unlocking doors so he can get some freedom outside.  However, their safety (Ryan will escape and run off as well) is our highest concern so we do have some fancy key locks on the doors at both houses.  So it is up to us to get them out as much as we can for their activities and exercise.

 

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So all and all we were pleased with their summer programs – next year I would like to get Ryan to Chris’s camp even more days – we got a grant this year for him to go 6 days but if we can get three grants then next summer he can go 18.  Chris went all summer from June 22 or so until this coming Friday the 20th.  This is where they met for camp – we started taking Ryan there a bit a few days this summer:

 

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It was very nice and also had a wood path.  The boys would walk with their class in the morning on the wood path.  Then by afternoon they’d usually visited another place and ended up swimming in a big pool across the county.  Really nice program.

 

Colleen stayed busy with different friends, often attending anime events and swimming. 

colleen and friends

Rog and I worked, and went out of town for business in June.  We’re going again the first week after school starts.  I also made it through computer class and Algebra 850 – intro to algebra.  I just finished that about 2 week ago and was happy to have passed (it was hard!).  On a break now, working on some transcription but not tons and going to be trying to get the house in shape before work and school again (school starts week of August 30 for me – biology and intermediate Algebra).  0809101226 Speech therapy and certification in autism and deafness is still the goal, Kent State.

 

Working with Congress at this point with several liaisons to try to find away to get Chris into the program at NDA National Deaf Academy.  We sure hope and pray it works. 

 

Watch the video about NDA’s autism/deafness program  I just feel so excited that this could be the right program for Chris.

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birthdays with business as usual.

16th birthday party is all done and in the books.  I think Colleen and her friends had a good time.  I worked on and off the whole time, and we had a busy weekend with also taking Chris to the park with Ryan and Rog too.  Rog is feeling a lot better. 

I actually still need to send the one blog post still on to the Congresspeople about how there really needs to be way more help in Ohio for individuals with disabilities needing medication adjusting.  More posts, prayers, calls, and arrangements are still needed.  But thankfully Chris is doing better at this point and we really enjoyed our time at the park with him this weekend!

 

Photo344 I have been excited to find Windows Live Photo Gallery and with it Live Space, and plan to gradually get all my photos on there.  So going to work on that on and off.  Also, long story about how financial aid was messed up for me this summer deleted but short story is that I should be back in my class by tomorrow and have lots of homework to do!  busy!

Trivial and important often reside together

As a person who has always been not so good at multi-tasking, I have had to learn to become quite good at it!

The important things in my mind always are:

  • Taking care of our children and the family’s basic needs.
  • Roger and I getting our work done.
  • Us getting our schoolwork done when we’re in school (Rog from ‘99 to ‘01 and possibly going back next year, me since January of 10).
  • Colleen getting her homework done, trying to get some entertainment/learning activities for Chris, and supervising Ryan in his education pursuits (He’s rather like me where he’s obsessed with school items and loves his alphabet and learning to spell, so that helps – he creates his own educational hobbies!)
  • And just keeping enough clothes to wear to be clean and dishes washed to be sanitary!

So I would always try and do these things first – still am!

But it’s amazing how many other things pile up when you do this.  Things you feel you never have time for.  More dishes that you just can’t get to.  Filing (started that last week as far as cleaning out the file cabinet!).  Grass that needed cut that Rog had been too ill to do (he’s outside now finishing it, and our friends helped us with it last week (pictures coming). 

Then things arise like 500pp of printing needed printed out for various agencies.  Like in one week (happened to me in April).  That means you run out of ink, and have to buy it.  Then you have massive phone calls on this, that and the other.  Every day is full of interruptions.  Necessary interruptions, unnecessary ones, and sometimes annoying ones!  Sometimes pleasant ones!  Sometimes a spontaneous trip to the park is a tremendous treat (hopefully soon!)!

All in all, I’m trying to learn, that it’s not always the important all the time.  Sure, I’m working on getting out my deadlines of the week for work, and do my homework, and cook dinner.  But I don’t want to be a once a year or once every six month blogger any more.  And I want to be spontaneous.  Enjoy Chris today who’s at the house as he didn’t get to go back to school yet after his hospital stay.  Enjoy the trivial.

 

Blessings!

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The brick wall

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.

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 non-verbalness, no one would accept him. This is in all kinds of centers in probably a 200 mile radius from here.

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 monies – 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?

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8 years old – thoughts

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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.

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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.

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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!
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    Almost August and I haven’t even been swimming yet!


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    Originally uploaded by criscollrj

    We took this back in June when we did take Colleen & her friend to the beach for a while. We haven’t been back. I didn’t go in that day and neither did Ryan — Ryan has been afraid of the “different” lake water and this is the closest he’s ever been to it! It was the first time he ever played in the sand.

    So we’re hoping to possibly go Saturday — it’s supposed to be 83 and sunny so I think it sounds like a good day for a picnic lunch! We’re also taking Ryan to the free screening of Veggie Tales in our area.

    After working 4-5 weeks at the office and most of the time blending that with transcription fairly seamlessly, this week got fairly rough! I decided in the future I will either work at one job or the other and not try and combine them. Of course that will involve having plenty of notice for the out-of-the home job — I imagine it will be a few months now before they call me in again. I love working there though — it’s like family (worked there before 88-94 & again 02-03).

    I FINALLY got some sleep last night and have one more day of work today– if I have time at work I’ll start some of my transcription due next week but at least it’s thankfully not something due today! I also am working on sorting all the papers that have stacked up the last 6 weeks or so.

    Got Chris’s guardianship and trust papers all done and am in the middle of filing them. These are papers we had to do with his becoming an adult. He may be coming home soon — we’ll find out for sure on Tuesday. I am very nervous about this but have to have faith, and know that 99% sure he will now get 24-hour care with his being discharged. Our eventual family goal with Rog’s parents is to have our own small group home for him and some other individuals.

    Please stay in prayer for Rog’s dad who has been very ill, and doctors are still doing tests to see what is wrong.

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    Graciously accepting help

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    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: http://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.
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    Christmas 08

    It’s a good thing I love Christmas, as it comes whether you want it to or not! Pics in flickr 😉

    I’m going to order the kids presents today, and Colleen is having a little party for her friends this Friday night. Next Saturday the 20th is the family party. I look forward to that every year. We make special food like broccoli casserole with chicken in it and oatmeal chocolate chip cookies, and just relax. Chris will be here too that day! He was here for Thanksgiving and he had a good time. He really seems to love his new home too and is content as far as I know.

    I just worked about 8 days straight and am taking today off. Have a huge to-do list – here’s some of it:

    invoicing for work
    Request work from E for tomorrow
    order Christmas gifts
    look over bills
    make drs. appts for Rog and I (dentist, eye doctor, foot dr. for me, etc.)
    laundry
    finish decorating tree
    take thanksgiving stuff to attic.
    Dailies (5 minutes each room)
    Plan dinner
    Call about Chris’ guardianship
    Begin to look at Christmas newsletter
    Order printer ink, and stamps.

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