3 with autism diagnosis —

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 🙂

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Welcome back to morning naps

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). 

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STRATTERA

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).

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stable here —

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

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interests survey

LJ Interests meme results

  1. attention deficit:
    I believe my whole family suffers from this. Apparently I have it, but it didn’t affect my school work – I was kind of a brain ha ha! But my housework abilities suffer.
  2. back to school:
    I still want to go back to college, but this, again, is on hold. I really want to get either a music therapy degree or an occupational therapy degree.
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aggravated!

If anyone can see why I suddenly can’t post pics, let me know???

I’m trying again here…. Ryan on the bus! I copied this from successful picture posting from the past….

If this doesn’t work you may hear me screaming, and as my kids are running wild and loose (and healthier now, so more able to get into trouble) now I will have to give up and be very crabby until tomorrow’s quiet time!!

dori, perfectionist ADD type who has trouble giving up on things that bear no importance at 7:10 p.m. on a school night with her house a mess and screaming 3 year old next to her.

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Cutting down on computer time.

just posted this in my other group — thought I’d update here too.

Time: Sunday, 2/13/2005 10:34:34 AM (#65523)
User: dori

Comments: Hi – had to make a tough decision about 5 weeks ago and cut out just about all my computer time.

Quick update – Since Ryan quit napping right after Christmas, I made the decision to cut down/out the computer time because it was becoming unsafe to not monitor him at all times. Even now I’m watching him over my shoulder,but he’s eating at the moment. He is into everything, climbing up on ledges, cabinets, tables, etc. He still will often throw things, including pitchers of juice, etc. He is in speech therapy 3x a week still and starts preschool in 2 weeks (2/28). I am looking forward to a break and I think some structured school time will be good for him as well. He barely made it (by 2 points or so) into the special needs class in our city due to his speech. Of course that means we are hopeful he will be catching up on speech even further, which means he wouldn’t be eligible next year, but then maybe he can get into headstart. He will be in a special needs/typical mixed preschool from 2/28 until end of year in May.

Chris is still sleeping well and fairly healthy. He has periodic fits still where he runs through the house hitting himself and us and the walls – maybe 2x a week at this point (down from 2-3 times a day at Christmas when he had a cold).

Colleen is doing well in school and has speech and OT as well. She is also going to counseling 1x a week, since November.

Our work situation is still the same, Rog is looking, not finding anything, but his work is steady, and I had to stop looking “for” him as my job is these kids’ mom and right now Ryan is my biggest challenge. We have lost our insurance, but the kids still have theirs. Thank God.

I’d better go… I’ll try and post when he goes to school 😉

dori

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Time: Sunday, 2/13/2005 10:36:21 AM (#65524)
User: dori

Comments: He actually quit napping before Christmas, but I was still putting him down for nap times and he’d nap about 1x a week. But what happened right after Christmas scared me so much I stopped putting him down – he jumped up and down so much that somehow he hit his face on the crib bars and split his lip and bruised his gum. We thought he’d have to go to the ER it was bleeding so much. But it stopped, and it healed up. But no more “quiet time” in the day in the crib for him…

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Exhausted

I just wish I had time to write out all the things that go through my head.  I just go and go and really never have a down time.  If I do take a down time, something else suffers, like my sleep time, or my pile of dishes, or my daughter’s homework.

I’m not depressed, but I’m unfocused and also eating compulsively, and I’m sure it’s from the stress.  The kids are exhausting me.  They’re wonderful – I LOVE THEM! And I’m happy I’m a mom – I always wanted to be one.  BUt I thought being home I’d have ALL THIS TIME and could do all I wanted to do with them and the house, and have me time too….

nope!

As usual I have to go…

I think the hardest though is Chris is having these fits again where he marches through the houses screaming and starts at the height of it grabbing my arms or hitting me, making scratches as he does it.  He’s hitting the aide too and I’m afraid she’s going to quit — I need her!!!  She’s helping us 14 hours a week but it’s just through Medicaid – I know it’s not the highest paying job in the world for her!

I’m worried about Ryan some as he’s SO hyper, and when he jumps on us in the morning (4:45, this morning) he seems to have no regard as to where his head goes on the bed and I’m scared he’s going to bash his head in!  He has spells where he’s this hyper.  He crashed his head into the side of his crib a few weeks ago and got a split, bleeding lip.  We almost put him in the ER!  I need to set up a bed for him instead as he’s learned also how to put his leg over the side.

I’m thinking of trying again to put everyone (we all have ADD, I think – 3 of us are diagnosed) on a sugar-free diet again (with the help of Splenda and Diet rite pop!) to see if we can calm this behavior down.

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posts from my moms group….

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!

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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

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