Prayers to you all at the closure of this crazy strange year! Do not believe I’ve sent paper Christmas newsletter since 2014. I did do electronic newsletter in 2019 (published 12-31), and RIGHT after that my criscollrj.com site failed. So whether many of you had an opportunity to read it I’m not sure! I mentioned some dark scary times. Faith in God is so important, and prayer of family and friends is paramount. This post says a lot. Please read if you can. https://www.criscollrj.com/2011/04/11/the-powers-and-exponents-of-faith/, emphasizing Hebrews 11:6 “And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.” I read through entire blog this year and reviewed it and edited it in preparation of moving back into my soon to be revamped original blog site. I’m glad I wrote so many of these entries years ago – I’d forgotten many of them.
I just recently got a second hearing aid, after having one left hearing aid since 2006 and wearing it haphazardly. My hearing loss is less severe – mostly in my left ear, but some in my right. Ryan’s is second least severe, with his having more loss in each ear than I. He has refused to wear his hearing aids since first grade, and his school through audiological evaluation at our local deafness school said that his trying to wear hearing aids at that point was more detrimental, as he was tantrumming and not able to focus on his work because he was so uncomfortably stimulated, than just going to school without them. He has also actually been passing his school hearing screenings which is surprising.
Christopher is most severely affected, with his being almost totally deaf, and he will wear his hearing aids. He has had one broken now for over a year and we have been struggling with finding a competent hearing aid provider; we found one that we thought was good and then found out that they had twice made his hearing aid mold wrong, making it too uncomfortable for him to wear. We are now taking him to another provider next week and hope we have better luck. Of all three of us, Chris will most benefit from his hearing aids. He also seems to really enjoy wearing them! I think because his hearing loss is so severe, he is so delighted about hearing anything that he doesn’t really get bothered by the sensory annoyances of them. Although he has thrown them out of his ears after 5-6 hours before and we have to then find them in whatever room he was in! So he has to be closely watched while wearing them…
When wearing my left hearing aid off and on for six years, I did experience some better hearing. However there are drawbacks. Every background sound is also louder. I thought perhaps when I got the right ear hearing aid (which I did a few weeks ago) that I would start to hear things better like music playing in a crowded courthouse, for example. However, as I sat with Rog at Jefferson Co. PA courthouse the other day, every sound in the courthouse was louder even as the music was louder so I could still not hear it any better. Roger could still distinguish the songs before I could. Positively, though, I could hear Roger talking better! And that is important! And hearing high-pitched birds in the morning, and crickets at night, is also a plus!
About wearing the hearing aids themselves, and thinking of how Ryan is so sensorily over-stimulated with them, after I put them in I feel, for quite a while, like I am all plugged up. I eventually forgot about that feeling but occasionally it comes back, especially when I’m trying to eat with them in. I have the full sensation more in the left ear, which has the inside the ear only type of hearing aid, than the right, which has the type of hearing aid that is around the ear with just a tiny tube leading to inside the ear. I have actually found this right ear hearing aid to be more comfortable and less obvious to see in my ear when I look in the mirror. The left inside the ear aid also seems to often feel more blocked than the right, but that could be because of the wax buildup my audiologist told me I am experiencing. Once I visit the ENT and get that cleaned I’ll have to see if I then feel any difference between the ears. I also quite frequently have a sense of itching after wearing them for several hours. This has not happened in my right ear yet but I have only had that hearing aid a few weeks.
If we could find a way to write a social story for Ryan to be able to overcome these feelings I’m sure he has as he wears his hearing aids, maybe we can help him to learn to wear them again. The benefits of his wearing hearing aids would greatly help him! In school he mostly has one-on-one help, but that may not continue for his whole life If he can experience group learning in a more complete way by being able to hear better that would be wonderful.
Chris of course will greatly benefit after he gets his correctly fitted hearing aids! from what I remember the hearing aids help him to hear some, but not great. I believe they said they get him to almost a 20 dB level, which they explained should be someone speaking to him in a rather louder voice. I am hopeful as Chris wears his heading aids longer at school that he will pick up more words again (he talked when he was a toddler and young child) and remember how to pronounce them. He could also enjoy music again that he used to listen to. He also used to play the organ beautifully – it would be great if he could create music again!
In my spare time, here and there, have been tagging and categorizing my posts back to 2003. I got to November 2005, then just found a way today to import all the comments from Livejournal! This is exciting as I just don’t get to Livejournal much anymore so this way all my comments both from WordPress and Livejournal are in one place! And this pleases my computer geeky self
Any Live Journal readers here that were on my friends list in the mid 2000s – if you want to add this blog that would be great. It’s fun re-reading your comments now as I re-add them [all the posts were imported in on private and I have to edit and tag each one] – it will take me a while to get them all in but hopefully in a few months all the comments to the posts that I have put on WordPress will be added (not all my Live Journal posts are on WordPress, so some comments will still only be on LJ – – -)
Have had a few things done to the house recently – some unsafe wiring fixed and getting some drains cleaned out. It will be nice to have all that done for winter! We had to clear part of the attic so in the process brought the tree down. It’s in my bedroom – we’ll probably put it up sometime this weekend without decorations.
Can’t believe the holidays are around the corner – refuse to change the background yet of my blog – ha ha – but will choose the layout and probably change it right away on Friday!
Took difficult square roots test in Algebra yesterday – hope I did all right.
Taking Ryan to his hearing evaluation today for school – it’s at our deaf school in Mayfield.
Have lost 10 pounds since September but no more – need to get back on that.
Of course in the middle of fall semester (perhaps exactly in the middle?) and that is keeping me very busy!! I tend to do algebra at the beginning of the week mostly and biology at the end. Then I tuck transcription in usually Wed/Thurs (job due today, so nothing different there).
In the few evening hours I’ve had and sometimes early morning I’ve been going through ALL my blog posts here, starting ins 2003. They all needed tagged and categorized. I don’t even really understand the difference between that so I’m doing both – tagging and categorizing, mostly the same titles. Ha. If that causes trouble I suppose I shall find out somehow- but at this point it seems fine. Also adding the pictures back in where I can where they were ”lost” going from Livejournal to wordpress.org then to wordpress.com then to blogger then back to wordpress.org.
My goal is to have this blog ready for real publication, where I post it on autism sites, etc., and really try and get some help and recognition for autism and deafness. Chris needs a lot of help. I DID get a comment https://criscollrj.com/2010/05/23/the-brick-wall/ from a person at the National Deaf Academy, who found my blog online, and I was thrilled about that. If I can just get all the tags done and the blog totally organized, and then keep trying to add to it, perhaps it can get top recognition and the boys can really get some help.
So then, of course this with studying, working, and everything else I’m doing, challenging, but it should be SO worth it!
When I was a little girl I remember labeling and assembling all my school supplies weeks before school started. I loved the way the notebooks and pencils looked, all new, crisp, and shiny, and the way they felt smooth and clean in my hands. To this day I still have a habit of ruffling the side of book pages, feeling absent-mindedly how smooth the side of the book feels as I read or listen in class. I don’t know what it all means but I do know it hasn’t gone away. On a side note, I think Ryan has inherited my addiction to school supplies – he loves his notebooks and bookbags very much – it’s so cute!
It is a good feeling to have gone back to school after wanting to for about 15 years. I remember in 1995 first considering that I would like to go back to college after that time being absent for 9 years. When I graduated in 1987 I had been going for 3 1/2 years, and even though I didn’t realize it at the time I think I needed a break simply from not knowing what I really wanted to do with my life. Continue reading “Fall semester”→
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!)
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
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.
I know I need to update my resource pages and do more research on what could help people most on ideas for autism spectrum and deafness.
I think I may also type more of the kids’ histories in here and what happened at certain ages. I think also going back and proofing my posts may be good (sometimes in blog transfers you get strange font characters in the switchover, and I know I did see some at place). I also need to tag. (2020 – glad I’m at least proofing finally every post!!)
I have really enjoyed sharing through blogging, now for 6 years, and would like to do it to its best purpose and to be a help to others.
Ryan had some new appts. this week. These are copied from a post I did about them – the first one is yesterday:
“Don’t know if I ever mentioned but we had a long-awaited genetics appointment today. At first, I was going to be tested for connexion 26 (an inherited hearing disorder – my dad had hearing impairment, I do, my boys do, and so does my cousin and possibly her brother). I never got the test because our insurance expired [our kids all still have insurance through Healthy Start].
Anyway, when I called about the test, to try and get it in before the insurance expired in May, they asked me more about our history, and after hearing about the boys and their autism spectrum, etc., they decided to instead test Ryan first. So we brought him in today.
He had a hard time being patient but did do some nice artwork on the board with markers!! We were able to give the dr. & assistant all our history, etc. He was supposed to have a preliminary blood test today but then he got so upset and was screaming in his stroller, so we put that part off for Monday. We were there about 1 1/2 to 2 hours already by that point.
There are more complicated tests, now, I guess, for ASD’s and other disorders, where they test different chromosomes and stuff. There may even be some syndromes that involve autism and deafness. So Tuesday we’re going back and Ryan is going to have blood test (s?) and we’ll see what they find out. [poor baby!] This will also tell us probably if my hearing loss is genetic.
They seem very interested in finding out what caused all these things to happen in our children. They also seem very knowledgeable and professional.
Eventually Chris will be tested too – he’ll have to be put to sleep for it.
Everyone knows us there too — we’re famous at the Cleveland City hospital systems…..
But it was a tiring day. It’s also emotional to think of everything that’s happened. It’s all for a reason, but it’s hard to go through it all–explaining how Chris lost his words twice, how we didn’t know he was deaf until he was 14, how Ryan’s developed mild symptoms (which breaks my heart over again) and even Colleen’s struggles with concentration.
Then we were going over all of Chris’s digestive problems he had as a young boy, and his weight gains and losses, and all the ups and downs of his health, and his skin infections etc (a lot of this is detailed early on in my blog).
I’ll keep you up to date as we get results…”
“Today was Ryan’s appt. with behavioral center. He was assessed and we were told that they WOULD find someone to come help us at home with him some, but that they couldn’t promise they could find someone that really specializes with spectrum disorder. This lady (nurse/counselor) also suggested that perhaps we pursue something like risperdol for him. Chris was on risperdol for years – it actually did wonders for him – but I just wasn’t ready to accept that Ryan actually needed anything like that. But, maybe he does… we do have TONS of behavior problems with him, and —-“