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, medications, Pans/Pandas, sleep

Monday and much better!

I can’t write too much today but wanted to update any readers that Christopher is doing MUCH better!  We are so grateful. He was hospitalized in a child psychiatric center a month ago and they regulated him on meds that are causing him to be much mellower and to SLEEP!  He sleeps about 6-8 hours a night and even often naps 2 hours a day now.  Boy what a difference!  He still has some challenging behaviors, but with sleep it is doable!

I will update more later, thanks for prayers!

this was the beginning of the difference for Chris that lasted quite a while.  Ryan also got better with a significant med addition.  Whether the cause was Pans/Pandas or something else we don’t know.  

dori

 

autism, Pans/Pandas, residency, writing

poem

2020 – it has been heartbreaking to re-read all this.  One of the hardest times of our lives — 2003-2004, as well as 93-94, 97-98, 2010, 2016-2019.  Autism, deafness, and this possible Pans/Pandas disorder…. so much heartbreak.  So grateful Chris (and Ryan) are doing better now.  Here Chris had to wear a helmet as he was hitting his head on all surfaces….  that lasted a few months.  

Comments: a poem about Chris, it’s been a while.

Felt good to write something. I think I got a lot out this way.

to say goodbye to you would be so sad
the child of my youth
all my life I dreamt of your arrival
it made my heart so glad

we waited years for you
you were born and we clung to you so tight
checked you in the night, looking for your breath
we were so careful to do everything just right

our firstborn son, you began to slip away
we didn’t notice at first, just thought you were shy
or quiet or the deep intelligent type
when you ceased your speech at 2 I thought I’d die.

to see you hurt yourself, the precious skin and self
that formed inside of me, then was born
is catastrophic and deadening, the greatest tragedy
of our lives, the event we always mourn

more than autism itself, the pain, the violence
that you would be in such pain,
the sound of fear is perhaps worse than just the silence
that we would hear if you were just happy but quiet, playing in the rain

like you used to do out in the pool, when you were five
the rain beat down but you were happy with your symphony
of bubbles that rose above you like a crown.
you always loved the pool, the bath, the river, more than any pony

that any other boy would like
we were sad at your difference at times but loved to watch you smile
and now to hear your laugh instead of your cry
would answer our prayers, at least for a while.

The whole family needs to be kept safe and strong
whatever it takes to help you all grow
and to also keep the girl and little boy growing up in health
I pray an answer comes soon, that we will know.

It wouldn’t really be goodbye, if it comes to a new home
it would be a place that could help you thrive
in your own way, in your own time
if that is the decision that is to arrive.

We would still see you often and love you so much
though of course we hope the answer is that you stay
whatever happens I know that the Lord is with us
And will give us strength to face each day.

@dh 7/5/04

 

autism, college, medications, music, Pans/Pandas, residency, sleep, waiver placement lists, waivers, weight

another old copied post…. things are not good :(

 

 

User: dori

Comments: feel like the straw that broke the camel’s back just happened – my aide just called and asked if I thought Chris would hit her today how do i know… – I said I didn’t know, he’s mostly hitting himself, but that he had hit me some especially on Saturday. She said she’s not coming today and that she’s going to call her office and explain how much he’s hitting her (he did hit her a lot on Thursday – she had a sore arm from it) and whether they still want her to come back – what do you think will happen?

2020 – yet another pans/pandas note… is that what this aggression was from??

I told Rog if I don’t have an aide I think we will have to have him go live somewhere else. We may do it this week. I’m so depressed. I can’t do this with no help. My mom did help me yesterday but he was hitting her and pushing her and she’s only 5’4″ and about 105 pounds so she can’t take too much -she’s also 61. My MIL isn’t even coming around to watch him anymore really – she’s pretty sick right now.

Continue reading “another old copied post…. things are not good :(“

autism, college, deafness, medications, organizing, Pans/Pandas, relocation, relocation North Carolina, residency, sleep, weight, work

a little update finally —

speak and spell
You’re a Speak & Spell!! You nerd, you. Just
because you were disguised as a toy doesn’t
mean you weren’t educational, you sneaky
bastard.

What childhood toy from the 80s are you?
brought to you by Quizilla

it is a lazy Sunday and I have SO much cleaning to do.

Last I wrote Chris was having a VERY VERY VERY bad time. We had an awful 4 months – February – sinus infections, ear infections with ear injury from hitting; March, 2 ear surgeries, missed most of the whole month off of school, plus drug reaction to Seroquel/Risperdol and withdrawal; April, entire month, I believe, from school, just about (he may have gone a week or so), had 1-2 more sinus infections; May, Tonsillectomy/Adenoidectomy, and finally had to start more meds as he was still being aggressive, self-injurious, and very very upset and not sleeping at all hardly (like 3-4 hours every few days is all); and June started horribly as well but FINALLY last 3-4 days his new meds (Tenex) is kicking in and he’s sleeping a little more and is seeming happier. FINALLY.

(2020 pans/pandas)

Continue reading “a little update finally —”

health, medications, Pans/Pandas, sleep, Uncategorized

update

cut & paste (boy on lap)

for right now a copied note of how things are going….

Colleen was sick the other day but doing better and went to school yesterday. Colleen was complaining about her ears last night. If she has further problems today I’ll take her to the dr. tomorrow (today if absolutely necessary but Chris is home today and has to go to the neuro where we’re there for like 3 hours….).  Rog is staying home to help watch Ryan and get Colleen after school.

Ryan has a cold right now.

Yesterday actually seemed very hectic…. it just goes on and on. But Chris did okay – we did end up picking him up at school – we took him to the pediatrician who could not find anything physically wrong with him.  (Teachers and nurse etc. were saying they were concerned he was so upset and acting strange that he might be having med reactions). He said the very bad danger signs to look for in med emergencies like the Seroquel he’s on, are him bending his neck back and not being able to return it to the upright position, and him sticking his tongue out and not being able to return to his mouth (aren’t those so strange???!!!). Neither of these appeared so he said just give him some Benedryl in addition to the Seroquel, and that is supposed to counteract any side effects that may occur,  just until we see the neuro today.

Continue reading “update”

autism, health, organizing, Pans/Pandas, sleep

another quick update

hope to soon have time to ramble, but here’s just a cut and paste….. simply a copied email I just sent out. Prayers appreciated…….

I wanted to send one final update on Chris and then hopefully things will be calm and stable for a while!

(A summary in case I had missed any of you in rushing to get the prayer requests out – Chris had surgery on his ear 3/10 after he’d caused hematoma on it from hitting it so much. He then destroyed the surgery as we could not keep him from hitting it/picking on it and he had another surgery at the hospital on 3/19. He got out of the hospital on 3/26 after being anesthetized again on 3/26 for the pediatric surgeons to make sure ear was healed (this time under 24-hour supervision). It was, so he was sent home.)

Continue reading “another quick update”

Pans/Pandas, sleep, weight

Up all night…

Seems like it. Actually Chris has quieted down so I hope to go to sleep SOON. I was up late last night with him and then overslept this morning and he missed his bus. Ended up taking him to the dr. – another sinus infection. It goes together – the sleeplessness and the sinus infections. We are so weary – we hope this new thing works – giving him antibiotics for 4 weeks instead of 2.

For some reason at night I’ve been reading about anorexia. I think I stumbled across something surfing Live Journal sites (think that’s where it was?) and then just started reading about it. It’s amazing what the mind can do in a person. I never had anorexia or bulimia but did get to the bingeing state. I always would binge before I started diets, ever since I was like 10 years old. I would pick a date to start dieting and right before it I’d eat huge quantities to “get it out of my system.” I have done this to this day.

In ’99 I joined a diet system called “Weigh Down” and I followed through my pregnancy and nursing as well. It really changed my outlook a lot. It is based on just eating when hungry and stopping before full. However, after that I kind of drifted away from it (as the program developed some spiritual inconsistencies and a lot of churches dropped the plan, and I got disappointed in the whole thing and just didn’t do it anymore). I really got slowly but steadily back into the diet and then binge thing. So Jan. 20 I started following the basic hunger/fullness principles again and am down 4 pounds. It is so liberating – I can eat what I want, as long as I’m hungry, and I stop when I feel satisfied (not full!) and wait for hunger to eat again. And it’s funny, after reading these anorexia/bulimia sites, I can see where a plan like this would be a help to those people too after they have maybe talked to someone about their low self esteem issues.

I think I’m actually going to attempt to go to bed… hopefully!

dori

Edit, Feb. 2020.  As I am rereading this blog and have my Pans/Pandas suspicions for Ryan, I note this about Chris having this sinus infection, and possibly having Pans (he had a psychiatric breakdown shortly after this).  The clues you see years later….