Guilty again!

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Yes, I’m guilty again, of not posting because:

  • I don’t have time.
  • I don’t have anything new to say.
  • What I’m interested in saying really won’t interest anyone.

That is really ridiculous, though, as even if no one else reads this, I read it.  I do go back and look at these from time to time, and to see something that makes us smile, or brings a memory, or even makes us cry a little is worth sharing.  Even for ourselves.

So, what have I been busy with?  Well, school until last Friday (Now on spring break, working out of town with Rog) was very challenging (math!) and kept me busy nonstop.  I was also working some at the same time.  During the week break I am on now from that, as you can see by the pictures, we had a snowstorm, and I went on a trip to gather geographic information on Ireland (the obviously Irish pictures) and now we are on our trip out of town for work, and met our friends for dinner last night. 

So I go back Monday, and need to spend double the time on math, as my grade is not so hot right now.  I still have two months to bring it up.  I will be also sending my computer back to Asus for some repairs before the warranty expires, meaning that I will be using Ryan’s computer for the necessities, but won’t be working during that time as I don’t have Windows on that computer, just Linux giving the availability of Internet for bill paying, etc., and open office if I need it.  So I should get more math studied and completed with the addition of transcription projects not being an option.  I don’t know how long the computer repairs will take, as I have never done this before!

Roger’s surgery is now pending most likely at the end of this month, where after almost a year’s wait he will finally have a cyst and hernia removed (they were hoping it would all shrink on its own with time, but it has not).  Roger is probably about 95 pound lighter than he was in February 2010 when he went into the hospital with his gall bladder and related problems, and looks so nice!  I think he’s passing me up with his weight loss <3.  Prayers for him are appreciated.

Still looking for the proper residency for Chris – this is all taking so long it’s driving me crazy.  He’s going to finish off the school year staying with his “mama” and “papa,” and then we’ll see if he’ll come home to our house as he still awaits his residency or I/O waiver caretaking arrangements, or what we’re going to do.  He’s a sweetie.  He stays at our house every weekend, sometimes sleeps, sometimes doesn’t, and still loves to laugh!

To end, I wish everyone a Happy St. Patrick’s day, and in memory of that:  http://criscollrj.com/2010/03/17/miracles/.  We will have our corned beef and cabbage dinner this weekend, as we will be out of town.  I can’t wait!  And a big thank you to our parents that are keeping up the ship at home while we are gone.

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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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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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Something to know if your loved one is placed in residency —


When you reach the difficult decision to place your son or daughter with a disability in a group home, it is good to know what services will actually be lost when they go in. Now, there is no problem most likely if the home provides good services while he or she is there, and keeps them there. But if there’s services you are used to getting at home and they don’t provide them at the group home, there is no way to get them aside from you paying for them, and if they are discharged from the group home, other services he or she used to get as a minor, in your home, may be lost, not to come back just because they are discharged.

Here is what has happened to us, so far.

  • Chris had wonderful health services in his group home. We were totally satisfied with that.
  • While he was in his group home, he lost his connection with “FRS,” our county’s financial assistance for things such as camps, activities that need to be paid for, and equipment. The group home covered his food, shelter, and things like that but did not cover hundreds of dollars for things such as Saturday camp that he had had paid for by FRS for many years. Last year, while he was in the group home, we (actually his grandma) had to pay for it.
  • We fully expected him to be back in FRS when he was discharged by the group home (via their choice, he was not appropriate for the home, they said). So we requested FRS to pay for his Saturday camp this year, and they said no, that he was OFF the service even though he is now out of the group home. By him being placed in the group home, he lost all rights to ever be on that list without starting at the bottom of the list again. NO ONE TOLD US THIS.
  • He has a year and a half wait for services, but only is eligible anyway until he is 22 years old (I think at the end of his 21st year, so after November 20, 2012 he’ll have to no services anyway). He will be 19 in a few weeks but has at least an 18 month wait for services.
  • Our understanding was that after he was discharged from the group home, without an appropriate new home to go into (where services are provided for autism and deafness and there are special procedures in place to deal with his screaming and insomnia) that he would be placed at the top of the list for an I/O Waiver to provide services for him in his own home. This was also the group home’s understanding, and they even advised us to go ahead and tell the county that he was being discharged as that should be an impetus for the I/O Waiver for care to be received very quickly.
  • After he was discharged we found out that that is not true, that his being discharged has no bearing on the list, and it could be 20 years before his place on the list is called. This means a very long wait for transportation assistance, assistance with adult employment, additional care in the home, etc.
  • I now am fearing he may have lost his place in the adult services list. I don’t know — I have done an email to check. But I haven’t received a newsletter from them in several months, and if he lost his place on there with going into the group home, he will have no workshop services when he gets out of school at 22.

I’m just posting this so that others ask all the questions they need, before placing their loved one in a group home. I’m not saying not to place them – Chris’s health has improved greatly after his year in the group home and he has been on a good routine — they helped him a lot. I just did not know he would lose his place on the lists with his placement, and am not totally sure I would have done it that way if I would have known.

Just another challenge in the walk we walk, as parents of children with challenges.

2010 note – Chris got into the FRS again quickly, as well as the adult residency list. Also, FRS serves throughout their life, not just 22. We are, however, still waiting on the I/O waiver. Just wanted to be accurate (12/29/2010).
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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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    Looking down the road

    I know that everyone with an autistic child, whether or not they have mild autism, severe autism, or autism spectrum along with another disability such as bipolar, deafness, blindness, or something completely different, doesn’t know what they will expect as their child (children) grow older. It is almost too overwhelming to look at as everyday you are working with your children to make them the best that they can be, along with still mourning what you wish they could be.

    In approximately 1996 when Chris would have been 5 or 6, our county MRDD workers stood in our kitchen as they evaluated Chris for special needs services as an elementary school child. This was heartbreaking to me anyway, just facing that Chris would be attending special needs classes and having services for someone with a disability. We didn’t even want to face that even though he’d been diagnosed with autism for 2 years.

    As the workers spoke with us, they said, it is good to get your child on a waiver, or more than one, as you never know what the future will bring. They described these as one) a waiver on which he could get adult services in his own home and two) a waiver on which he would be placed in a home for special needs people as an adult. I don’t remember if he was on any other waivers.

    We did sign up for these waivers, hoping we’d never need them. However, in 2008 we did have Chris go to a group home, as a 17 year old. This is more described in my other personal blog and I’m sure I will bring it up again here, as things are still unfolding in that area that we don’t know the results of.

    Two lessons here, though, I would say to always sign up for the waivers when your child is young. You can always so no later. It’s never permanent either — we said no to the residency waiver 5 or so times as his name came up, from age 13 to 17. The 6th time we said yes, and he’s been in a very caring group home for a year now.

    His I/O waiver listing was messed up. In 2002 I called to see where he was on the list — he WASN’T ON THE LIST. They told me he was on in 1996 and never put him on. We don’t know to this day what the six years lost would have done. Maybe he could have already had an I/O waiver and had someone in the home to help him already. We’ll never know. Now we are awaiting the I/O waiver in earnest, as he may be coming home from the group home as he is yelling too much and not sleeping.

    So another lesson, in addition to signing up for the waivers early, also CALL every year or so and make sure they’re still on the list and where they are on the list.

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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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    Where’s Chris? At the blue house…




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    Originally uploaded by criscollrj.

    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!

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    Colleen back to school—




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    Originally uploaded by criscollrj.

    Colleen went back to school yesterday but only made it half the day. She saw four of her friends, though, including the girl in the middle. Girl on right is still at the middle school. They’re not in any of her classes. She got to three classes and then came home sick. We have all had a bad cold. Today she’s going to go in for the other half of the day – so I’ll find out when 4th period starts and drop her off for that.

    We’re having Chris’s meeting today for attendance. The only thing that made me nervous is they said they had to discuss his need for a one on one with the director and that it would be director’s call to approve it. I hate him to have another change. I hope they give him an opportunity to stay and get used to everything.

    I had yesterday off which was nice – had meetings and cleaned the office. But I wish I had today off too. I am going to take time now (was up early for Colleen’s bus) to set up this third computer we got from Rog’s aunt and clean just a little more, then start typing at 8 when Ryan is gone….

    Hey, if anyone still actually reads this can you just comment and let me know? I need to possibly republicize this on technorati, etc. as I don’t know if it’s even on the blog links anymore or what’s going on. I know my business blog seems pretty dead too – just haven’t had time to update anything.

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