Living & Loving, Autism & Deafness
Our Journey with our loved ones and our lives
I’m looking to read and post and respond to old comments to me on Thursday, I hope!
Hope you had a wonderful blessed holiday! We had a good one other than some mild colds and Chris having some sleepless nights therefrom. Here’s our pics
more soon – dori
I’m not very happy about the fact that Chris is up at 2:15 a.m. Just Sunday night he stayed up all night until 6 a.m. He seems to be doing this more often. Last year he started sleeping regularly July 15 with his hospitalization/med change. From july 15 until sometime at late fall he slept every night, then he had 1-2 nights he was up and he started suffering from his ear infections. All winter long if he stayed up it was usually an ear infection. It settled down again and he slept again for months and then last month (july) was up maybe 3-4 different nights – then, his swimmer’s ear. I wonder if he’s getting swimmer’s ear or ear infection again. My worst fear is that he’s losing the effect of his meds…. it’s happened before. (But not on these meds)
I am pretty tired and hope he sleeps soon – tomorrow is a very busy day and even at this point if he falls asleep right now I’m looking at about 4 1/2 hours sleep before I have to get up. We are going to Ryan’s last day family event day with an ice cream social. My mom is helping me. She is also watching kids so I can get a haircut. Then Thursday we’re going to a local waterpark (Rog will be off) for a fun day – Colleen had coupons from school. I’m not sure how much I really want to go but I know Colleen will enjoy it.
Ryan has had a lot of struggles at his summer preschool. He started hitting and even biting. They feel perhaps they didn’t have enough one-on-one attention for him. At his regular school he has a one-on-one. It will be interesting to see how his regular school year goes. His regular teacher in the school year seems to still be looking to make sure he’s not autistic, although the neurologist has ruled it out for the moment.
I really would like to run away somewhere, for just a little while….. only 1 more month (less than!) til Ryan goes back to school and I can take a BATH! or a NAP
DANG, i really wanted a shower, tonight too – was not counting on an all-night Chris party.
Ryan will be going to speech therapy 4 mornings a week in the school year. Since Colleen starts school at 8:00 instead of 9 I’ll be taking him to therapy at 8:30. It will be good to be done with that early and back home. He will get on his bus then M-Th. starting September 6 at 11:45 and if he rides bus home he’ll get home about 3. I’m hoping they let Colleen ride his bus – we’ll be in the situation where Chris gets home at 2:30-2:40, and I’m supposed to pick up Colleen at 2:30-2:45, and Ryan at 2:45. They said they’d probably have her go to Ryan’s class (they’re in the same school – preschool is at the middle school) and I hope they just let her ride his bus home. Or else I’ll have trouble being in two places at once!
Then I have to make decisions on several things – last year we did swimming on Monday, skating on Tuesday, counseling (for Colleen) on Wed., art (Colleen) on Thurs., and chiropractor (for all) on Friday. This year I would be adding on OT for Chris that is special at a center, possibly the same center for Ryan, and Colleen wants to do girl scouts and 4h Guinea pigs/small animals. Something will indeed have to give.
I am pretty sure I am not doing regular Christmas cards this year – I always do them and enjoy it SO much but this year for a little break I think I’m going to do holiday emails right at Thanksgiving, and then only send maybe 20-30 cards to family that doesn’t have email. A friend of mine and I plan to do some homemade goodies/crafts for Christmas gifts.
babbling to stay awake…….dori, not happy at 2:30 a.m.
TEN Things You Did
01. Obtained necessary psych. hospitalization for our son through God’s help.
02. Finally slept second half of the summer after being up all night most night’s first half of the summer while Chris’s meds were so off.
03. Went to Port Clinton/Put-in-Bay on vacation for first time ever!
04. Camped in a cabin for first time ever.
05. Stayed up all night in cabin first night with son who wouldn’t sleep (strange place!).
06. Attended 2 “95.5 the fish” functions (radio) that were so cool with great bands and fun people!
07. Went 8+ weeks (still going) with NO money except bare minimum due to job stoppages for hubby (Luckily had saved $300 before that for Put-in-Bay).
08. Lost 15 pounds (hubby did too!) on South Beach Diet!
09. Collected unemployment all summer but never found a job even though I diligently looked for good job with benefits. (Actually been looking since Jan.)
10. Grew tomatoes and peppers for first time in 3-4 years!
NINE Favorite Bands/Singers Of The Summer
01. Third Day
02. Chris Tomlin (U2’s Where the Streets have no Name!)
03. Sarah Groves (cool concert!)
04. Rebecca St. James
05. The Newsboys
06. Selah (You Raise me Up)
07. Amy Grant (has been favorite since 1979!)
08. just to be eclectic, we love hearing that one song by The Darkness when it comes on 😉 http://www.thedarknessrock.com/media/audio/ (I believe in a thing called love, just had to DOWNLOAD IT NOW!) though it’s just a sample ;
09. AND we loved 98 FM’s WNCX’s pretend Woodstock the other week when they played endless old progressive and other rock tunes INCLUDING IN THE CAGE BY GENESIS! Yeah!
EIGHT Places You Ate At
01. Outback Steak House
02. New York Deli
03. East of Chicago Pizza
04. Walmart
05. KMart
06. Dairy Queen
07. McDonald’s
08. Burger King
SEVEN Inside Jokes
01. None that I know of?
02.
03.
04.
05.
06.
07.
SIX Things You Bought
01. Rented vacation cabin at Port Clinton!
02. Food
03. New earrings (Avon demos)
04. Dirt for our yard (boy it’s looking spiffy!)
05. Microsoft Money 2004
06.
FIVE Things You Accomplished
01. Well, technically after school started, BUT finally got my dailies going again where I straighten whole house every day.
02. The Lord accomplished getting Chris’s meds regulated so he’ll SLEEP…
03. Lost 15 pounds.
04. Cleaned out entire 3 drawer legal size filing cabinet.
05.
FOUR Movies You Saw
01. Just Married
02. Freaky Friday
03. Cheaper by the Dozen
04. The Lion King (again for Ryan, first saw in 94 with Baby Colleen)
THREE Things You Wish You Did
01. Got on an exercise program (but I AM walking 2 miles a day taking Colleen to/from school)
02. Been able to buy or win tickets to Third Day concert.
03. Read Bible every day (I need to START a devotional quiet time!)
TWO Rules You Broke
01. Cheated on my diet whole vacation time and like a week before and 3 weeks after!
02.
ONE Thing You LOVED About This Summer
01. sleeping WELL the second half of the summer and seeing Chris so much more healthy in the meantime.
That was a fun survey. This summer was not bad. The beginning and middle were horrible but the greatness of the end really made up for it!! It was wonderful to go on a vacation with our friends to an area we’d never been to before. We are lucky here in NE Ohio to have the lakes and rivers all around us – I know we take it for granted. Here 
is a picture of another State Park area where we went picnicking Labor day. Far away you can see Chris splashing and Colleen playing. Many times I do want to live in North Carolina near the mountains, but we are blessed here with a nice place to live as well. We are blessed.
Which Degrassi Girl are You?
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I love Degrassi – can’t wait for new season! (watch on the “N” on our new digital cable which I don’t want to get rid of with our “broke-ness” now….)
Doing great, though I feel bad I missed church. Chris fell asleep just moments before we left! He is doing very well – naps every day still (a little earlier than expected today – usually he’s nodding off a bit at church which is a GOOD thing). So next week I’ll give him the pill a little later.
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
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 :(“
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?
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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)
long time no see! tired… up with chris who I HOPE is just about asleep, so some surveys for now….
1. What is/are your middle name(s)? Ann
2. If you had been born the other sex, did your parents tell you what your name would have been? Michael David or David Michael!
3. Do you have children and if so, what are their names? 13 year old Christopher Owen, 9 year old Colleen Renee, 2 year old Ryan Joseph
4. If you were to ever have a child or more children, what would you name them? I’m done, but we also liked Craig, Danielle, Shannon, Rhiannon (yep if Ryan would have been twins Ryan and Rhiannon would have been interesting!)
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.
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.)