Category: children

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

a little update finally —

criscollrj

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)

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autism, college, relocation North Carolina, residency, waivers, work

anyone familiar with north carolina?

criscollrj

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.

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autism, deafness, God, medications

Tardive dyskinesia

criscollrj

Chris had some strange symptoms at school that developed yesterday with fast blinking eyes, extremely frequent vocalizations, staring upwards, etc., that were very concerning to them that he was having bad reactions to his new med Seroquel. We took him to the pediatrician yesterday and he was prescribed Benadryl to counteract any side effects of the med, and then today we took him to the neurologist who advised us to go off the med gradually and gave us a schedule for that.

We have been reading about tardive dyskinesia – a particularly troubling article is http://www.breggin.com/neuroleptics.html. This article involves schizophrenia and not autism, but it was concerning nonetheless. A more middle of the road article is http://www.ninds.nih.gov/health_and_medical/disorders/tardive_doc.htm. I feel we’re going to try Christopher med-free for a while and perhaps try some nutritional avenues to help him as much as possible. We have been wanting to do this for a while, actually, but we were at the same time afraid to take him off his Risperdal (which he is now off of and is taking Seroquel in its place).

unfortunately now in 2020 neither one of these sites will load — will have to find another.

Continue reading “Tardive dyskinesia” →

autism, health, organizing, Pans/Pandas, sleep

another quick update

criscollrj

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.)

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autism, deafness, health, residency

From the hospital….

criscollrj

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

 

adhd, autism, deafness, God, health, music

Finally a chance to breathe

criscollrj

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

 

autism, Uncategorized

Asperger’s?

criscollrj

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.

children, interests, music, organizing

busy busy busy

criscollrj

— you’d think I’d be sitting around eating bonbons by now, this SAHM, who has not worked in 7 weeks! But my to-do list keeps growing! So far I have

  1. Organized pantry and linen closets
  2. Cleaned half of each bedroom (a lot to clean!!)
  3. Rearranged and cleaned living room
  4. Balanced checkbook September through December
  5. Did all filing and paper sorting, once (need to do again, though!)
  6. Completed various paperwork projects (but have more to do!)
  7. Have taken children to numerous dr. appointments and attended school meetings

So very busy life for me!

Ryan is talking more that I’m home, for which I’ve been so grateful. I need to work with him even more, read to him, etc. I have been taking him to a music class at a local organization that is very fun! He also likes to play my guitar 🙂 This means I cannot really play it at that time as he grabs all the strings ;). I hope to get caught up enough on housework so that I can take 15-30 minutes a day to practice by myself on the guitar. I would like to get good again like I was in high school/college.

I still dream of getting back to college to get my music therapy degree. It would be cool to be really in practice on the guitar by then so I could progress a lot farther with some lessons there (as guitar will probably be my instrument of study there, though voice would be great too!).

Well I have a very busy day today with my mom coming over at 9:00, and it’s 5:30 now, so have one hour to scoot through kitchen and laundry room cleaning before I have to get Chris up for school (bus comes at 7).