Living & Loving, Autism & Deafness
Our Journey with our loved ones and our lives
Decided to switch my word press com blog over to blogger so my blogs can be in the same area. Christmas newsletter to come. Testing to see if the date appears on this post — I redated the last ones to mirror the dates they were actually written on WordPress. Christmas newsletter will be coming next.
2020 – AND that blogger site is here! https://www-criscollrj.blogspot.com/ no content though — I must have pulled it all out when I went back to main blog site. Pretty background!
I started crocheting again a few weeks ago — I’m making a table scarf for my computer table and plan to make another for the other table. I used to knit and crochet a lot when I was a young teen up until maybe 15 years ago. It’s really soothing to do it again.
Planned to watch the new episode of 90210 on the computer, but ended up watching
My So Called Life instead (the final episode) instead, on Hulu, as last night’s 90210 is not on yet. I really loved My So Called Life, and can’t put into words how I sometimes can identify with Clare Danes’ character in that show – – -as well as Brian.
So, back to work tomorrow after busy day today running around town trying to reestablish Chris’s items such as bank accounts, SSI, etc. It’s amazing how long all that takes and how tiring it is. Now I have another large packet of papers again as his SSI recert for his medical need is due.
Still waiting for test results on Colleen – – posted on Facebook but not here that she’s been tested for anemia and mono for how tired and exhausted and weak she’s been on and off lately. Hopefully we’ll find out by tomorrow —
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.
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).
2020 note! Glad I posted the above 2010 note, as in the ten years passing I had forgotten exactly what happened with that!! Chris DID get I/O Waiver, 2011. then Ryan got one in 2018. So thank God! Also, a few posts ago I posted my new addition to Youtube, this video I made for my communication class in 2014 about Waivers. Watch it – though it may be out of date, still crucial information. AND, I’m thinner now… ha! https://youtu.be/Ab947nZWlLE
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.
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 —
(2020, added this about waivers, from my communication course in 2013. https://youtu.be/Ab947nZWlLE
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. (2020 – again, the original web site address of this autism blog are unknown and all posts have been imported into my personal blog…)
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.
More soon.
(2020 – adding this. It is important. https://youtu.be/Ab947nZWlLE
Yes I added link again! Watch it! I will try and update at some point probably by a text post, as to what kind of changes have taken place in the last 6 years.
(2020 – another blog I’d started, imported into this one. I’ll just leave as is, but the explanatory info is that I was going to have a separate autism blog, but did not continue. Thus, its context here. The original is unknown. I started an educational autism blog after this which is here https://autism-teach2learn.blogspot.com/ with 2 lively posts! But can’t find the origin of this one. Here it will stand…. the first post in my autism blog from 2009. I also have no idea right now how to fix the font.
After typing into my personal blog, at its 3rd home right now at blog (2020 – used that site for a year or so) , I am a bit stymied attempting to begin this new blog that has been on my mind for a while now. Technical details like WHERE do I want to house the blog, and what to call it, have interrupted my just BEGINNING the blog, which I’m attempting to do now.
My purpose in this sharing endeavor, to become a better resource and help to those of you out there watching your children with autism and other disabilities learn much of what I have learned, but hopefully faster, and perhaps to share with me things you have learned faster than I have. We also have co-morbidities (that’s such a terrible name, isn’t it?) in our different ability’d children. Due to my dad apparently having an inheritable deafness gene, our Christopher is totally deaf (found out when he was 15; he’s now 18) and Ryan is partially deaf at age 7. I also have a slight hearing loss.
At this moment I’ll simply direct you to this resource page: http://criscollrjblog.wordpress.com/autism/, but I have to confess that is out of date; I will most likely be updating that and moving that onto this site.
(2020 – most current autism resource page is here, but is still out of date. http://criscollrj.com/autism/)
The new header I made (first one on WordPress.com!) is of the Maryland Mountains we saw on our business trip in early July. I know I “facebooked” about it in the pictures on there, but never typed on here. Then I found out a friend of mine from the transcription board lives RIGHT there at Deep Creek Lake. We’re going to meet the next time we go out there.
Then I saw another friend on Facebook had just seen the Backbone Mountain in Maryland near that area and had beautiful pictures of it as well. It’s so neat that such beautiful mountains are so close to our business trip area (we did travel a few hours East in the evening to get there, but it was so worth it!)
And check it out, googling for images, and there’s a lot for sale!
What a beautiful lot! Wish we had the $$!
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.
Wow, June 18th already. AND one month, one day on Weigh Down/Thin Within. I WILL DO THIS.
And we’re almost done with Colleen’s summer school and about to start Chris’s. I’ll be transporting in the morning and Gayle in the afternoon, bless her.
The only time we won’t be transporting children one place or another is the 3rd week of August, I believe.
Finally got our new checking account open – one of those open this and you get $100 free!! accounts – and I’m so relieved! Now everyone can say FINALLY Dorene will stop talking about how we have to get that DANGED CHECKING ACCOUNT open lol!!!!! It’s done. Now I have to get the new direct deposit form faxed in which I’m going to do right now.
And my thanks again to a certain angel to made it possible to do this today, on my husband’s only day available to do it, before the coupon expired for the account 😀
Ryan’s having a good time on his break – making sleep forts like this, playing with his Leapster, running around. His aide has also been taking him outside to play while I’m working.
