RJ is in the 4th grade now and starts Wed. in his autism class, with a new teacher for the 4th and 5th grades. Hard to believe I have an older elementary school student now! Will get pictures of all three kids and post soon.
Colleen is a senior! All the festivities that go along with it we will be discovering – I know we need to get senior pics, and order her senior yearbook, and she’s talking about getting her class ring. Then of course graduation, and the resultant party, and filling out a FAFSA for her this year, and visiting colleges. Some sort of graphic arts is her plan as we all expected.
Chris is also a senior in a sense – he is going to be 21 this November and is in his last full year of school. We want to also get senior pics for him, and whatever yearbook they may have. He is changing schools and is going to be in a workshop program that should lead to an excellent adult workshop for the years after this where he does not have regular school anymore. This school also has, I believe, a Homecoming and a Prom! He has never done these things before so we are so excited. He will also have gym and swimming. He has not attended this school since 2nd grade so it is a sort of homegoing for him – he has had several different schools through his lifetime, all with different focuses, pros, and cons.
Then me, I am classified as a senior at this point, strangely enough. it is also listed that I am in “pre” speech therapy, so oddly enough as a senior they still have me pegged into a “pre” associates degree area, where I actually already have an associate degree. This will change, however, after I maintain a 2.5 or above GPA for a while, and then I will be solidly listed as a speech therapy major. I did get a 3.4 from the summer classes so I am at a good start – need to get up to 3.7 or 3.8 by 2 years from now so I can get into the Master’s program. Classes – clinical phonetics, English grammar (online) and hearing science (don’t have the book yet). I start back next Monday. To drive to Kent two days a week. Good thing I love a good country drive – should be fun in the winter (ha!)
Actually took this picture at dusk in December, but it was a neat example of darkness outside and how I captured it with my new camera at the time.
But overnight, such a peaceful time. You want everything dark, and quiet, and to sleep solidly and restfully. And you want that comfort and peace and routine for your children.
I don’t understand why many children with autism cannot sleep at night. Chris is up now, it is 2:45 a.m. We thought he would be up – he has this weird giggle that starts about 5 or 6 p.m. on nights that he won[t sleep,and strangely enough like the beginning before they say “Wipeout” in that famous song. Whenever he makes that giggle Rog and I look at each other and usually say, “Wipeout,” and then say, or think, “Up all night.”
I am glad when he stays up all night at our house, as that means the next night when he’s at Rog’s mom’s and dad’s back with him staying there too with him he should sleep. We all need to share the care. I just wish I knew why he doesn’t sleep. We have tried about 20 different medicines many of which make all people sleep all of the time, seemingly. But not Chris. He is on melatonin but it doesn’t so anything – – – Clonidine worked for 6 years but wore off – we tried it again but it didn’t work. Geodon worked for about 3 years, then wore off. Those were the only two meds that ever worked.
Yes, another birthday today! Amazing how fast it all goes.
Was just reviewing some entries from my journal from back then – actually 5-12-94:
“First things first, I’m 2 cm dilated (as of last Friday) and am working only one more week. I’m ready to enjoy this summer off with my children. It will be beautiful. I know I will be tired and frustrated sometimes, with a new baby, more work, less sleep, Chris’s reaction, Chris’s speech delay, worry over finances. Financially we are feeling pretty secure right now, but I have only eight more weeks of pay coming. We must be very careful. We’ve not charged anything since February/March except for my car repair.
“We are praying earnestly for Chris’s speech. He still adds another word (some of past, some new) every one to two weeks. But it’s trying how slow it goes. He said “baby” at school yesterday, but didn’t say anything today. I will list in a little while all his words as of now. Praise God for them! In January he had none. Here are his words:
“January – present, 35 words: Bye-bye, hi, waffle, see ya later, all done, night night, no, juice, come here, Ma Ma, Pa Pa, Mommy, Daddy, Baby, Bear, Big Bird, lay down, sit down, ears, nose, shoes, socks, binky, hot, cold, yogurt, ice cream, truck, up, binky night-night, car seat, thank you, cracker, horn, beep beep,
“Plus, one time he said to mama, “Now, where did they go?” Now we ache to hear him speak several words daily, and to answer questions, and ask for things by name. The words now are random and to himself, not as a real conversation with us. We are grateful for the words, but pray for their increased purposeful use, and frequency. Sometimes, especially when Chris has been quiet a lot and/or throwing things (today). I cry for a while, a fear comes over me that he will never speak and communicate normally. It is a scary feeling. . . . I have to face these fears, cry over them, then put them at Jesus’ feet and leave them there. If this is what is willed by God (permanent disability) we must face it day by day through prayer anyway, so we will do that through this period of not knowing.
“Chris will be attending preschool for two more weeks, then we’ll be off for two weeks (with me and baby!) then will attend a Friday preschool for six weeks, then a gross motor movement class two days a week for four weeks mid-July –> August. This will be good for him – still a “summer break” from going four days a week, but something to keep him learning and occupied one to two days a week for a few hours (and give me a nap period!)
“The Lord really had worked some miracles – he is great and holy and is taking care of us, and we have a beautiful family: a beautiful loving son Chris and a coming treasure of a baby (boy? girl?) and a wonderful husband (who I wish I could see more).
“I need to get this house organized and check over budget tonight and it’s 7:30! I also need to make dinner! I just spent the evening playing with my Chris and writing in here. Chris and I played color matching, play dough (creepy bugs game!) and snuggled. After dinner I will get him in bed 8:30 – 9:00 and start straightening.
“I dream of getting this house beautiful and organized! Will take years. Yard too! Gotta make dinner. The next time I write there will be probably ‘a waah! a waah!’”
The Snowmen (NOT CHRISTMAS, MOM! lol – she put the Christmas bow with them – “that’s not right,” as Ryan would say). They are ready to go to the attic, all condensed and ready for their box as soon as I get it packed (Monday?) Still have two lone snowmen decs on the mantle where half of them were before —
Bought these awesome bunny baskets – 3 of them for 3 kids – at Gabriel Bros. ($2 each!) Also bought the bunny hanger – loved it!! The hyacinth (I think that’s right) was from Ryan’s spring concert – think I can finally put it outside if it’s not going to freeze again? Also want to buy some daffodils and tulips in pots, to plant later in the fall.
Roger had his surgery on Monday, and after a brief struggle with temp and not feeling well from some infection he is finally feeling better today and is eating!! So hopefully he’ll be home in a few days. A new beginning to a new part of our lives in many ways – Roger with his body hopefully fully healed now from all the troubles he had from his gall bladder (this was related to that, from last year), and Ryan and Chris both adding new skills to their getting independent and ready to fly to what they will become, and Colleen getting ready to be a senior next year, with college decisions to make – wow. And then me, on to Kent State in August – to take my first two speech therapy classes, phonetics and hearing science. Another time of change.
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.
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 National Deaf Academy. We sure hope and pray it works.
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!
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!
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?
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.
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.