autism, autism Ryan, children, chris, Christmas, colleen, deafness, dogs and cats, God, health, holidays, life, medications, Pans/Pandas, photos, Ryan, sleep, work, work at home, writing

2020 Christmas newsletter

Christmas newsletter

Just one of the 2020 pictures.  https://www.criscollrj.com/2020-monthly-picture-blog/   Click for our 2020 picture blog!!!

Verse I choose for Christmas cards


I wrote the following and printed as my first printed newsletter in 6 years! So much information, yet so much unsaid. I feel like the biggest lesson in this past year is to just grasp each moment and try and live to the fullest, and express gratitude for any good thing that happens. There is so much negativity right now, it is good to be positive as much as possible. And pray for your loved ones, and talk to them as much as you can even if you can’t see them.

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.

Continue reading “2020 Christmas newsletter”

autism, chris, sleep

Overnights —

101_0016Actually 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.

http://www.webmd.com/brain/autism/helping-your-child-with-autism-get-a-good-nights-sleep?page=2 may help some individuals who can’t sleep with autism.  Hmm.  I hadn’t heard of the ending item, bright-light therapy.  Maybe something to bring up as another treatment?

 

autism, chris, deafness, residency, sleep, waiver placement lists, waivers

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.

(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!)

Continue reading “The brick wall”

children, health, sleep

Kiddo-update

CHRIS:

Chris has slept like 4/5 nights now and we’re so pleased! Dad took him to Home Depo the other day and he had a lot of fun with that, and he also took two walks around our neighborhood. He seems to be doing better after his med adjustment (Abilify went from 10mg to 15mg.)

But we are still pursuing applying for the National Deaf Academy for him. I will be doing that soon.

He is also going to be starting vocational training at a local school for half the day – I think he’ll like that a lot!! It will make his day more interesting – he’ll go to his regular school half day and the other half a day. He may start this year, yet.

His weight was going up but now seems to be stabilized at 200 pounds. I hope he doesn’t gain any more.

COLLEEN:

I filled out app. papers for www.ecotohio.org homeschooling today and plan to fedex to Columbus tonight. I’m pulling Colleen out of school.

The particular homeschool is a public school, not a traditional home school. I could not do a regular home school where it was all up to me. Even this is going to be hard for me, but I trust it will save Colleen. I hope. She’s currently failing 4 classes. She missed 40 days of school this year from illness. If she’s going to continue to be ill often, and continue to be as anxious and sickly (often caused by nerves, I believe) as she is now, I think she’ll thrive in this.

I hope.

“ECOT educates over six thousand students between the ages of five and twenty-one from every county in the state of Ohio.

Running an online school requires as many resources as a traditional public school. In addition to our teachers, a staff of counselors, school administrators, customer service specialists, computer programmers, database managers, school-funding experts, shipping handlers and consultants enable ECOT to work.

ECOT is a public school that relies solely on a fixed per-student state tax allocation, without the addition of property taxes, private funds or donations from special interests. ECOT, as a public school, charges no tuition.

ECOT provides a valuable service for all Ohio students and families seeking an alternative to traditional public education.”

“What sets ECOT apart from other public schools is its home-based online learning environment. ECOT’s ability to provide a statewide K-12 educational environment through its own secure Web-based network, or intranet, is unique. The intranet restricts access to non ECOT-approved Web sites while providing a wide range of teaching tools and educational sites that are appropriate for students of all ages.

Just like other public school students, ECOT students have teachers, counselors, class discussions, report cards and out-of-class trips. Unlike other public school students, however, ECOT students are required to use computer and Internet technology to access their lessons, may never meet their classmates face to face, and are not subject to a dress code!

ECOT parents do not need to educate their children alone: ECOT’s teachers provide quality instruction online and actively engage each student to offer assistance and guidance. Parents have the freedom to directly support their children’s education, while letting ECOT teachers do what they do best: teach.”

RYAN:

His IEP is today, in 2 1/2 hours. I think he’s done pretty well this year. I expect he’ll be at the same school next year for first grade. Can’t believe he’s almost done with kindergarten. He’s writing 3-letter words and is talking much better!

Both boys are getting new hearing aides soon.

That reminds me, Ryan’s lost the battery case off his hearing aide. I need to take it in to Jane to get it fixed…

children, God, sleep, work at home

All things are possible

Things have been rough in a lot of ways lately – Chris has been staying up all night just about every 2-3 days lately, and there’s been continuous illness it seems with the kids.

But we have a new situation coming up where we will have 40 hours a week of help for the kids. A new aide already started last weekend for Ryan – Her name is Debbie, and her and our other aide Doreen made a good team with us to care for the boys and get a lot of cleaning done!! They will be here 7 days a week 40 hours a week (roughly) each starting next Monday (just 5 more days!). I feel things will greatly improve then – even though we may still be exhausted and sleep deprived.

Work is going fairly well though lately I hadn’t had time to do enough of it!! I have had about 15 hours of audio since early March that I’ve been working on for local clients. Rog is still doing court research and also helping me with transcription and doing some for Rapid Text as well.

We have a lot of plans for more house repairs with problems we’re having with the sewer system in the basement. It’s 95% better than it was three weeks ago though, but need more work.

I’m tired…

I am really hoping NOW we can get back to church – our helpers are coming Sunday mornings now so I can’t see why we can’t…

Now what is amazing that this song came into my head, and I instantly found after that in the list. God is that way for me – songs are my inspiration. Thank you Lord!

 

children, health, sleep, work at home

Spring and smoke are in the air!


0406200804360

Originally uploaded by

criscollrj

.

Our first bonfire of ’08. We and the boys enjoyed the some hot dogs and a beautiful 60 degree day – Colleen and her friend came over later and had fun by the fire. Damp though – we didn’t keep the fire going as long as we will later in the summer, but got some papers burned and just did something different than run errands or sit inside the house.

Work is going slow – not because I don’t have it — I have A LOT — but kids have been sick and life is just so crazy. Probably by the time school’s out they’ll all be healthy and ready to all attend school – heh.

 

children, health, life, NaBloPoMo, sleep

What I’ve been up to:

Directly from my post to my transcription board 🙂

I have had to take a bit of a posting break. I’ll probably try and get back to posting regularly after Thanksgiving.

What’s keeping me so busy:

* Everyone being sick, including me, going all the way back to early October. I’ve scheduled a drs. appt. in case this cough isn’t better by then and also plan a chiropractor visit for this afternoon.
* Because of all the sick days for the kids, I had gotten so behind on my work I could do nothing else, not even sleep. I got a serious sleep deprivation there and last night actually fell asleep at 8 and got to sleep until 5 (just getting up once with my son at 11 who was still up….) sleep finally! I’m just praying I don’t get a migraine from all the sleep schedule switching.
* I also need to file and finish cleaning my office. (I did clean the desks and switched desks with my daughter over the weekend and am now proud to say I have a resting shelf for my feet to transcribe on and can even easily switch feet – yay! I’m also the proud owner of new speakers with a headphone jack, as well as the aforementioned new ergo keyboard and the new external hard drive to store my hefty space-grabbing audio on…
* I’m going to take next week off of work (probably just do British QA in the early morning) and just focus on cleaning my house well for the Thanksgiving dinner we’re having here. Then I’ll be back hard at work the next week, though I MAY schedule another few days end of next week to finish Christmas shopping and start wrapping (lest you think I’m some kind of holiday guru, we have cut WAY back this year and are only shopping for the children – our children, our relatives, and a few close friends. That greatly cuts the list down.
* And I want to try and get more rest so I can focus on getting better.
* Prayers still appreciated for our family’s health in general and for Lisa specifically.
* I haven’t started this yet, but next week I need to sit down and do tons and tons of paperwork and stuff for the kids that I’m behind on.
o I have to schedule also two sedation appts. for the boys for hearing tests they do on the brain while they’re sleeping, and for my oldest to have his blood tests he needs for his meds, and for them both to have good teeth cleaning.
o I also need to schedule Ryan’s concluding genetic tests (They probably think I forgot about them, it’s been so long).
o I also need to fill out two autism scholarship forms as we’re considering possibly trying to have them attend this autism/deafness school in Florida if there’s any way we can arrange it (probably for next year) but it will take a lot of planning and research and special miracles from the Lord. (And possibly me moving down there just over the school year – sounds very complicated but if it’s what the Lord wants for the boys it will work out – I’ll post the site soon).

I hope we have a good family gathering here on Thanksgiving – that’s the first time I’ve ever tried to have one. I need to go shopping for my turkey, etc., and plan the meal.

I also plan over the next few weeks to update all my sites for the holidays – one of my favorite things to do!!

Blessings, dori

NaBloPoMo, sleep

Exhausted

Okay, I need to post every day this month.

Today I will post about how tired I am.

I got up at 3 and typed 25 minutes of audio and finished by 7 (yay!) and got 3 kids on the bus. Then I did proofing and THEN typed 15 more minutes of audio.

What is silly though is that as I did this occasionally my eyes would close. Then I would instantly start dreaming.

Through the day (thanks to probably the Coca Cola?) I was fairly awake and proofread my long hearing document halfway though. I proofed to audio 60 pp in 2 hours. Then my children came home and I only was able to do 15 pp in the next 3 HOURS. So I got an extension until tomorrow morning, bless my boss’s heart. (i have about 130 pp to proof)

As soon as my boys quiet down (hard to hear audio when they’re singing/yelling/shouting/rattling things) I will sit down and start proofing again.

And my eyes will probably close and I’ll find myself with my head on my hand, with my hand numb and tingling and asleep, and my face encrusted with the keys of my keyboard and drool coming out of my mouth —

restful sleep vibes, everyone!

 

autism, sleep, surveys

surveys and too tired to say much else

Ahhh, another work break. I had had one briefly before then worked another week. Now I’ve been off since Thurs. morning and am only working Tues/Thurs. morning this week.

The kids are doing okay – Colleen had a book report due this weekend and she DID do it though I don’t think she completely finished it, OR the book. She was supposed to review math equations with me but unfortunately I feel asleep on the couch with Ryan downstairs so kinda missed my chance. She was very busy this weekend and tired out with a water safety course she’s taking that will go into the summer. I think it’s important for her to have some rewarding summer activities but I wish they wouldn’t start the major portion of the training during the SCHOOL year- GRUMP!!

Ryan is making a lot of gains – he writes his name! – but I am so tired of cleaning up where he can’t get to the bathroom. He IS pee trained Thank Goodness! It’s just I’m so tired of finding poop on the wall or on the floor. I got up this morning half asleep and went to the couch to get my glasses and stepped in it YUCK! We keep telling him where the poop goes but he is not listening. I know it will happen – the pee training happened- but this is just getting gross.

Chris is staying up all night more often for some reason – I think it’s spring allergies. He did the same thing last spring. he’s totally switched over to Abilify now from Geodon and seems okay with it. He’s just very congested. He is still taking Loratadine (generic Claritin) and sometimes I give him Sudafed in the morning.

It is hard for us to bear all these things lately; Chris dumped ANOTHER bottle of dish soap down the shower drain. We buy 2-3 bottles a week because he finds them all the time where we hide them. He dumped all my shampoo last night when he stayed up all night. We hope he sleeps tonight -I am very tired and would probably be asleep on the desk right now if it weren’t for my falling asleep downstairs for about 20 minutes a while ago.

On to some surveys, then a web site I am making for someone that I want to finish by tomorrow 🙂

Surveys from Angela/Heather