KIM, thanks for your comments – you got me thinking about school again and about a conversation Rog and I had a few days before. I am not DEF. going to school in the fall. I’d LIKE to but things would have to be a lot different in a short time. Chris needs LOTS of work, and so do the other kids. Our house is getting a lot better on organization but it takes a lot of time and there’s two more rooms to remodel so that will bring more chaos. I’m simply going to gather information so I’m ready when the time comes. Do our financial aid papers, apply, etc. My gut feeling is that I won’t go until at least winter. It may be not until 2007 when Ryan starts kindergarten. Just don’t know!
Tag: autism
a little update finally —
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)
NORTH CAROLINA
Yes, I’m obsessed, I even changed my icon and background picture….
I’ll write more later but if anyone has any stories about moving or having lived there and what it’s like PLEASE WRITE ME!
(THe pic is me and Colleen in 1997 off the Blue Ridge Parkway in NC)
anyone familiar with north carolina?
We are again considering moving to North Carolina — I’m sure I’ve never posted it here (at least I don’t think so) as the last time we seriously considered it was 1997.
But with my husband needing to find a new job we are now thinking of it again – since there is a job move in the future anyway we’d like to consider whether to move to NC. We live in NE Ohio.
The reasons we have considered NC is that:
For one thing it is beautiful and close to the mountains and the ocean!
But another more important is that TEACCH for autism is centered down there, and though it is now up in Ohio too it started in NC and I have a feeling there may be more centralized schooling for Chris at all ages and perhaps adult centers as well — I seem to remember that there was, from when we traveled and visited there in 1997.
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.
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.)
From the hospital….
Ugh… a very nice hospital with awesome people but I’m tired of being here! But tomorrow I get to go home…
Chris damaged his ear with self-injurious behavior and had surgery on it 3/10. By 3/17 he had damaged it further as we could not control him to keep him from hitting/poking/punching his ear. 3/18 we spend 5 hours in the ER and 3/19 about midnight in the morning we were admitted to the area’s specialty children’s hospital. We have been here ever since (did go home for 20 hours from Sunday night to Monday afternoon).
Chris has adjusted fairly well now to the routine and the sitters and nurses and doctors. We urgently requested med regulation in addition to his ear attention as he was out of control at home, in the ER, and here at the children’s hospital. A large team is in place to help him and I believe they are helping as he is much calmer. He had ear surgery again Friday night. He shall probably be here about 2 weeks or so.
He was hitting everyone in our family on Thursday and it was completely out of control – he had even hit Colleen (9) and Ryan (2). So we had to get him immediately emergency help.
Prayers and thoughts requested as we continue on this path – he is also going to have a tonsillectomy soon and that will be a tough recovery. There is nowhere for him to go, either, to like a “nursing home/recovery” kind of stage so they’ll keep him here as long as possible and then try and have an aide set up for our house.
The Lord is in control… I just have to trust.
Blessings, dori
Finally a chance to breathe
Chris had to have surgery on his ear on Wednesday because he hit it so hard he got cauliflower ear. We have been watching over him at home – he seems better today so he’s relaxing a bit in the shower and I thought I’d take a minute here. Those of you who are inclined, I would appreciate prayers/thoughts for him as his ear heals. He is on some new meds that we believe are helping him now sleep at night – it’s been 5 days now that he has slept well. I hope it also calms him too so that he doesn’t bang his ears or head.
When Chris was in the hospital last summer I found this Bible verse. I have claimed it again as my promise that Chris will be guarded over by the angels. Psalm 34
17 The righteous cry, and the LORD heareth, and delivereth them out of all their troubles.
18 The LORD is nigh unto them that are of a broken heart; and saveth such as be of a contrite spirit.
19 Many are the afflictions of the righteous: but the LORD delivereth him out of them all.
20 He keepeth all his bones: not one of them is broken.
I pray that Chris will be delivered from this ear problem with no damage or further danger. I know the Lord is more than capable.
I know I need to go back to attending church. I want to get back into music ministry but the Lord will have to guide me back into that – I don’t see it being possible right now.
I was in the choir at churches off and on from 1987-1994, then 1999-2000. I greatly enjoyed it, and also did special music solos with guitar, and also sang for the kids in kids church that were preschool age. That was fun (that was in 2001). When Chris got too big to handle and had started all kinds of health problems, I had to quit everything. I miss it all and pray I will be privileged to be able to do it again.
BTW, I was definitely diagnosed with ADHD yesterday at the dr. All the IQ testing is done. I’m fairly high on the scoring with the attention part being lowest, no surprise there.
Housework calling….
dori
Asperger’s?
My daughter went to a new neurologist today – he thinks she may have Asperger’s as well as ADHD. This does not make me happy, but of course we want her treated for whatever she may have. Someday later when I have more time I’ll have to explain her history. But she is a beautiful, sweet, intelligent girl, 4th grade, and she has had attention/focusing problems. She has some very high interests like in animals, etc., but the teacher in her letter to the neuro described how she thought it may be a fixation for Colleen, so thus the looking at Asperger’s. I know, having an autistic child, a bit about Asperger’s, so I can see some of the areas where it may fit her. But I need to learn a whole lot about it. I am also very curious to know what to do about it, if she does have it. She will be still the same sweet Colleen, of course, whether she has it or not.
I wonder if my third baby will be diagnosis free……
Colleen got a beautiful hair cut today – it was down to mid-back and now it’s shoulder length and very bouncy with layers to the front 
dori
note from 2024, The sentence “I wonder if my third baby will be diagnosis free….” that is absolutely chilling.
RJ….
RJ had speech eval today and they want us to closely watch him and work with him a LOT as he may be a little behind. I was kind of thinking of doing some work at
home but now am reconsidering that. I think my hands might be full…. the kids are my priority!
This is a fearful area for us as Chris lost all his speech at 2 1/2. Ryan will be 2 on 2/22. But they said his play activity was great and that he didn’t seem in the least autistic. I’m just not sure I’m now going to send back him to day care at all right now – may just work with him at home intensely for awhile. The day care was able to take him on an as-needed basis so I could type at home. Well, at least I know that option is available if I need it! Kiddoes – always something.
I have more to update but so busy….
One thing I did want to mention though is my grandma passed away on 12/30. We will sure miss her! She was 92 1/2.
