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”→
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.
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:
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.
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). 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. We sure hope and pray it works.
(2020, as I said before, program was closed in 2014 for abuse. Sad.) Watch the video about NDA’s autism/deafness program. (2020 no site) I just feel so excited that this could be the right program for Chris. (nope)
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!)
Watching our children grow up in the world of autism and deafness, it has become harder for me to really be active in the community of autism, as it takes all our energy to just keep our children safe and well in the world. It is hard to see outside our own lives. I am grateful, however, that many people in the world, even people who don’t have children or family members with autism, are working so hard to promote awareness and that today instead of being a rare condition it is becoming one of the most discussed and researched conditions.
I am hoping through my life to also work to be an advocate and learned person in the world of autism and deafness, which is the condition that most affects us personally. That is an area of deficit today – there is little information or services on individuals with autism and deafness.
(2020 – had to delete 3 other dead links. will try and find more good links. Now need to also add links about bipolar and pans/pandas (which can look the same)….
I am encouraged that there are way more than when I started these blogs in 2006. I actually printed the Gallaudet University article (60 pages) and have read through about 30 pages of it. We also are applying for Chris to go here:
It will be hard to send him all the way to Florida, but it really sounds like they could meet his needs there.
(2020 – we pursued this HARD! I see the link is dead but left up anyway. Stopped when we got the I/O waiver in 2011. Later found out – years later – that there were some big problems with the place, but that does happen, and it doesn’t always mean the whole place is bad, or was always bad, or anything like that. There are crappy people EVERYWHERE, and GOOD people everywhere. But it was sad, the things I read about this place later when it was held in such high esteem by his for years…)
(2020, of course now those specific degree links are not working – but it is still Kent so I will leave up.I believe it was the pre-speech therapy degree (which I later changed to special ed) and the autism certification.
I also hope to get fluent in ASL either now at Lakeland (where I am currently attending) or at Kent. I hope in the end I can be of more help to my boys as well as other individuals.
Thank you to everyone in the world working to make a better life for those touched by autism, as well as autism and deafness
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).
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 —
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!
Something Ethan said on 90210 last night made me think. He was in the woods with a friend and just talking. He said this:
Ethan: “People think I’m someone different than I am.”
Friend, Liam: “Let me ask you something, why do you smile?”
Ethan: “I smile because I don’t want to cause trouble for anyone. I don’t want to make anyone’s life harder. Not my teachers, not my coaches, definitely not my parents. My brother’s autistic, so they need me to be easy, not make any waves. I don’t want to cause any conflicts so I just pretend like I’m fine. Even when I’m not.”
That really got me thinking. That is exactly the way I am…
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.
