Living & Loving, Autism & Deafness
Our Journey with our loved ones and our lives
yawn. Chris has switched meds from Geodon to Abilify, and is not sleeping as well.
I should have been keeping an official log, but really haven’t. BUT — today is early Sunday morning. LAST Monday night, about 6 days ago, was the last night he had his Geodon med. But for some reason he stayed up all that night even though he had the Geodon. So the next night, the first night without the Geodon, he did sleep. Continue reading “I remember when it was always like this—”
Ryan was diagnosed today with ADHD and also suspected PDD (pervasive developmental disorder, the umbrella term of autism that is most mild). He went ahead and gave the PDD diagnosis [which he suspected but didn’t know how much of the behaviors could be from his hearing loss] to enable him to have the most schooling and therapy. He should be able to go to all day school next year now for kindergarten in an autism class. I’m relieved about that in one way because I know he really needs the structure. On the other hand it breaks our hearts to have three children on the autism spectrum though, again, Ryan’s diagnosis could change as he gets older and more verbal and maybe it’ll change to Asperger’s like his sister who is just about typical with some vague shadow syndromes.
His ADHD seems rather severe and although he is only 4 he’s been prescribed medication – FocalinXR. I need to do some research on it. I’m afraid to give it so young- Colleen didn’t start on Ritalin and then Concerta until she was about 9, but she was never as hyperactive. He actually does very dangerous things – he has run into the street before and just yesterday he plugged in a waffle iron in the living room while I wasn’t looking for a minute and just left it heating. He didn’t ask me about it, just went, got it and plugged it in. He has become extremely hard to handle and even though he’s only 50 pounds it’s exhausting. 50 pounds is still 50 pounds. and on a day when 200-pound Chris is pulling me around – watch out.
They have always prescribed new meds for Chris that again I’m afraid to try. we think we’re going to try and hospitalize him to enable the med change – his last med change he had a psychotic reaction in 2004 (I think that’s the right word?) similar to tardive diskenysia (sp?) and it was horrible. I have to make an ASAP appt. for him Monday.
Thanks for prayers for us!
Prayers also appreciated for our financial situation – we’re doing okay but we got so behind both when Rog was laid off and I was on the one working, and then when he was working but I took a break due to the severe situation of the kids, that we are pretty behind. I’m about to put all our back bills on credit cards just to start with a clean slate because I don’t want any shutoffs. But you hate to do that too…
In the “small potatoes” category I really want to get my house cleaned up WELL by Tuesday afternoon for my weekly assignment wed. with RT. I worked a lot this last month with two unexpected large assignments (YAY!) from individuals (direct pay) and it was very worth it!! But I had never even caught up from Christmas [still have a Christmas tree up in the basement family room] and just need some time now to breathe and try and clean all the rooms well. I’m tired of tripping over things! To keep our sanity we just need to get our surroundings organized and I’d appreciate prayer that we could do that and keep it that way with everyone’s help in the home.
I also have temporarily (I hope only temporarily) lost my autism/deafness family picture blog due to moving servers (the new server so far has been unable to access my old servers files) and we’ve been unable to load the database even though it looks on paper simple as pie. This is 3 years of work (including old journals from another web site) and I had a lot of friends comments on there and some people who had asked for help with autism/deafness whose contacts will be lost if this blog is lost. I had just made it onto google and was getting some comments [though small and far between[ and now they’re getting a blank page. And i”m not sure whether to leave it blank and as is for the techs to work on or to make a new blank blog – not sure how to proceed. I know it’s a small thing but was so important to me – prayers on that appreciated!
And I have a bad headache today – had aches and pains yesterday half the day – and 3 people in my family have had a bad cold or flu and I’m surely hoping I’m not catching it.
I’m glad you are all here and that I still have this journal 🙂
(2020 as I’ll probably see noted in here later I did find all those blogs — they are pretty much merged in here now!!)
and once again I’m getting addicted to transcription!
User: dori
Comments: copied update with some additions at the bottom as I’ve been too busy to post anywhere – hope everyone is well – I’m TIRED! but happy, mostly ;}
Hello! been working on all sorts of things, Trying to send from gmail again – we’ll see if it works. I reconfigured it. I found out today I wasn’t getting mail from a manager out at Rapid Text as well – I emailed them about it (I read about the emails on my board) and never heard back, so just called them and she found my emails in her spam folder! So I’m definitely hoping this gmail works as something seems goofy with sbcglobal!
Continue reading “the keyboard calls again —”
Chris HAS been sleeping well at night for months, but was having more assertive (to put it mildly!) behavior during the day. After struggling for several weeks (months?) with his having trouble obeying limits and NOT pulling on our arms where he wants us to go, pulling us along the road, hallways, kitchen, wherever something is that he wants, or trying to leave places he didn’t want to be, we called an emergency appt. with the psychiatrist. He is a very caring doctor and listened to us and actually got to witness the “wanting to leave” behavior in his office, as did his staff in the waiting room (they called in an assistant for us to help as I had Ryan with me too).
Has anyone here taken Strattera? After reading about it on the net I’m a little NERVOUS. But I’ll still try it. Hey if I can give Chris geodon and Colleen concerta, then I may as well be a guinea pig too— just kidding, kinda.
Seems one loves it, or hates it. I hope I do okay. Starting on 40 mgs tomorrow. BTW, I faxed Colleen/Ryan’s neuro on their problems and we’ll see what he says (colleen’s increased daydreaming, and the aggressiveness Ryan showed at day care).
and I’m hopelessly behind as usual!
I’ve replaced with working with cleaning my house with a vengeance. Boy did it need it and still does!
I go this Thursday to the psych. to see if I need to some ADD meds. I still have trouble with losing things. I really have the house in pretty good shape but still couldn’t find Ryan’s book bag or shoes this morning. He went in sandals and a spare bag I had here. I also couldn’t find his hearing aids for a while and then remembered i’ put them in this other little bag. But wasted 5 minutes hunting for those.
I’m trying to force myself to stay on a system I call “dailies’ which keeps me petty much on track. I start in the back of the house and make all the beds and pick up extra stuff on the floor and put it away and wipe down both bathrooms with a bleach wipe. Then pick up the living room, and finally the kitchen. This takes me a few hours a day. I’d like to get to the point where in 2-3 hours I also clean the downstairs family room too and that bathroom but I still am not at the point where I’m getting down there. I also have a backlog of paperwork to file and stuff so that’s another chore I need to do!!! But it’s not automatic for me – I Have to have a system or it doesn’t get done.
Well, I’d better get to the system 😉 And I have the remains of a headache so not feeling great… was supposed to go to an exercise class today but putting off til Thurs. AND MUST go grocery shopping this morning– my aid is not coming as she usually does in afternoon for Chris so no way I’m taking all the kids shopping. She was in an accident – not sure what happened – hoping she’s okay!!
dori
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 :(“
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.