Re: Relieved & Missing him... most recent update

[Guest guest]

Thanks... I appreciate it.

SO...

The first part of the visit went great. He was in good spirits, we played a game

(he won without cheating! LOL), I showed him some pictures I brought of our

cat's new hair-do. Our long-hair cat had to get shaved bc it had a lot of mats,

and Sam hadn't seen him yet so I brought him some pictures. Then we got a snack

on the way to his therapy appt. WELL, all was well & good until his therapist

decided to simply try to have a conversation with him about 1. why he had to go

to the hospital, 2. what it was like at the hospital and at the current

facility, AND 3. how things should be at home when he returns on Tuesday. He was

up and around the room, climbing in and out of my lap (we are talking about a

75lb 4'7 " almost nine yr old), giving me hugs that were just a little TOO tight,

changing the subject repeatedly, refusing to answer, etc... UGH. So Dr. R.

finally says, " why don't your mom and I have " adult time " and you can play in

the hall? " This is something he HAS done successfully every other session, at

least for five or ten minutes. TODAY, he came in without knocking, because he

couldn't/wouldn't even leave until he KNEW the door was NOT locked to begin

with, at least ten or fifteen times in the ten minutes that we were attempting

to brainstorm a plan for when he comes home on Tuesday. The semi-good things is

that Dr. R. said to me, " I think I understand a bit better, Heidi, how it must

be to live like this ALL the time. " I had said to her, " welcome to my life...! "

Needless to say, THERE IS NO CLEAR PLAN! UGH!!!!!!!!!!!!!!!!! She is the EXPERT

and it was clear that she was just as stuck and frustrated as I was with the

fact that he would not and/or could not participate in a conversation about what

would make things better at home, but also would not and/or could not tolerate

us having that conversation without him! SO for now, he is supposed to be coming

home on Tuesday, I can do the best that I can to be proactive about as many

things as possible, but at some point in the day I NEED to use the bathroom, he

NEEDS to stay out of my personal space, I NEED to feel safe in my own home, and

I don't know how any of it will be any better! He won't even engage in a

conversation about it!

Heidi

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> I do wish you luck. I hope it's a better day today. I know we are not to

preach our beliefs here, and I won't. I just want to say that I will say a

little prayer that it's a good visit.

>

> Steffanie

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> To:

> From: hdvoigt@...

> Date: Fri, 13 Aug 2010 16:19:11 +0000

> Subject: Re: Relieved & Missing him...

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> T

[Guest guest]

Heidi, I was thinking like the therapist, talk to him about those 3 things.

Sorry he was too hyper to listen.

Just thinking as I read this -- can you talk to him about the #1 thing he is to

do (work on) when he comes home is to let you have your " bathroom time " without

coming in. That bathroom time is your " quiet time " and he can take a toy/book

and sit outside the door while you get 15 minutes of quiet time in the bathroom.

Maybe get some timer to put outside with him. And maybe a " reward " chart could

be started and he gets more points/stickers on it beside this " chore " the better

he does.

Rewards can be working towards a new item to buy or just extra TV time or

staying up 15 minutes later or a movie night or favorite dinner night or a game

night...doesn't always have to cost $$.

Quick thoughts. We will all be looking forward to hearing how things go when he

returns.

You've probably said but I missed it - what did they do about his medication

since he's been there?

>

> Thanks... I appreciate it.

> SO...

> The first part of the visit went great. He was in good spirits, we played a

game (he won without cheating! LOL), I showed him some pictures I brought of our

cat's new hair-do. Our long-hair cat had to get shaved bc it had a lot of mats,

and Sam hadn't seen him yet so I brought him some pictures. Then we got a snack

on the way to his therapy appt. WELL, all was well & good until his therapist

decided

[Guest guest]

Hi

Since yesterday he did work with the staff at his the " house " where his is a

little bit on the plan for when he comes home, mostly for what to do when he is

feeling frustrated, etc. But the fact that he was willing to work on it at all

made me feel better.

As far as the bathroom time, I like you idea for the reward, and we were already

trying something similar before he went to the hospital but hadn't had time to

see it have a positive effect. I would be happy to have FIVE minutes at this

point!

They did raise his medication while he was in the hospital and we should be

seeing the positive effects (if there are any) soon.

ALSO, my mom and I went to see him today and the visit went VERY well. He has

only seen her one other time since school got out because my family has

basically denied anything has been going on with him. So the fact that that the

visit went well was a relief...

Heidi

>

> Heidi, I was thinking like the therapist, talk to him about those 3 things.

Sorry he was too hyper to listen.

>

> Just thinking as I read this -- can you talk to him about the #1 thing he is

to do (work on) when he comes home is to let you have your " bathroom time "

without coming in. That bathroom time is your " quiet time " and he can take a

toy/book and sit outside the door

[Guest guest]

Great Heidi, I'm glad today went well! He's been so good thru all this (despite

the outbursts), about being away from home.

I thought later, re that bathroom time, maybe you could say it's your 15 min

quiet time and HIS 15 min quiet time, that everyone needs a few minutes of that

each day, a few times, to rest their mind/body. So you two will take it at the

same times. Though he may be too smart to buy into that, or OCD won't let him.

When (another son) went thru an OCD-like separation anxiety fear and

became my " shadow " , he'd stay outside the bathroom or somewhere near by. If he

heard a door close in the house, he'd be speeding down to see where I was.

Didn't matter if I was in a room with only one door, his fear had him scared he

wouldn't see me again, I'd get out some other way. Another time, after getting

locked in rooms a couple times, when younger, and not being able to get out, he

wouldn't be in any room, including a public bathroom, with the door fully

closed. Yep, picture me standing outside men's restrooms with my foot in the

door!

>

>>

> ALSO, my mom and I went to see him today and the visit went VERY well. He has

only seen her one other time since school got out because my family has

basically denied anything has been going on with him. So the fact that that the

visit went well was a relief...

> Heidi

[Guest guest]

Hi Stormy.

Funny you should say that, because one of my best friends (also a special

educator) who has known Sammy very well over the years just posed the SAME

question to me recently. She has been working on an advance Psychology degree

and said she sees a lot of Aspergers traits in him. So far, they thought he had

ADD (only inattentive type)in the spring, but are no longer sure of that once

all the OCD stuff started to get out of control and because the stimulant

medication clearly didn't work. I guess it is something to consider, because

even today, I noticed a lot of sensory things with him. We were in the " comfort

room " at the house where he is staying, and he was showing me his favorite

things to do there, such as the weighted vests, body socks, etc. He was excited

to show me and was putting more and more vests on, them jumping up, asking me to

see if I could still pick him up, until OBVIOUSLY, eventually I couldn't. My mom

noted that he seems a lot younger than he used to, like he is acting how he used

to when he was 5 or 6.

Also, he RARELY if ever looks in people's eyes, definitely has trouble

understanding speech patterns and tone of voice (takes many things literally or

the WRONG way), has worked for years w/ me on social skills that did not come

naturally (I thought it was a result of the PTSD), has AWFUL handwriting despite

being a GREAT reader, is much better at individual sports (tried a few team

sports but he COULDN'T do it), too MANY sensory issues to list here, could tell

you ANYTHING about Transformers or how to " invent " something out of paper...

As I sit here listing this I realize these are all the things my friend Sara was

saying to me are Aspergers symptoms, but I never really put it together. I guess

I should look into it more and talk to his doctors. Thanks for mentioning it to

me though, I appreciate. At this point, anything that will help...

Heidi

>

> Heidi, I am wondering is OCD his only diagnosis? The right meds are critical

for

> my dd. They were able to get them right for her while inpatient. Have they

only

> made 1 change while inpatient for him? Neurontin made a big difference for my

dd

> but she can't take SSRIs and I don't think they use it often. I hope he is

able

> to be a little bit more independent when he comes home. At least enough to

give

> you a little time alone. A lot of my dd's anxiety, all types, turned out to be

> caused by her Aspergers which was diagnosed very late. Some of what you have

> written reminded me of her. Stormy

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[Guest guest]

Hi Heidi, have to say you listed a lot of traits for Aspergers Syndrome. (Lots

of kids without AS also have some sensory issues.) I'd see if there was a way

financially (or homemade) to get some weighted blankets and vests for home.

Could make a big difference. You'd still have the OCD stuff to work on of

course, but maybe can look at some of his other needs from the perspective of

his having Aspergers and approach them from that way.

>

> Hi Stormy.

> Funny you should say that, because one of my best friends (also a special

educator) who has known Sammy very well over the years just posed the SAME

question to me recently. She has been working on an advance Psychology degree

and said she sees a lot of Aspergers traits in him. So far, they thought he had

ADD (only inattentive type)in the spring, but are no longer sure of that once

all the OCD stuff started

[Guest guest]

Hi

I have made some small weighted lap blankets for students before, never occurred

to me to do that for Sam. Although he does have his own " Self-regulation " area

in the living room where he can go to " chill out " or relax, or simply get his

engine running " just right " as we have worked on the Alert Program for a while.

Are you familiar with that? He has lots of tools available there, and has even

taken to hanging out in his " mummy " sleeping bag in there reading for well over

twenty minutes... very cute at times. I do think it is the deep pressure that is

missing though... hmmm... I will have to work on that, and soon as he was also

using the body sock there. We have one at my school I could borrow until school

starts I suppose. (not even sure I ever got reimbursed for that purchase...

lol). Then We would have something until I could order something...

Did I mention we spent TWENTY minutes " fixing " his shoe laces today? We were

sitting on the bench outside chatting during the visit when he suddenly decided

his shoes didn't " feel right. " He took one off then the other, and very politely

told me, not asked me, that I was going to help him get his shoes " just right "

because it was my fault they weren't because I hadn't been there to help him fix

them since he had been away... Rather than argue about the demanding, I decided

to move on, enjoy his company, compliment him for using his words, and offer to

help... little did I know (although I should have known because it has happened

many times before), that it would be a good TWENTY minutes of chatting and

fixing, tightening, loosening, etc... until finally, the shoes were declared

fixed... well... I think he eventually decided he would rather play. I am not

positive they were ever " just right " or " just wrong " , although that has happened

many times before, I think he just wanted to sit there with his feet in my lap

and have some TLC, hear about the cat, the guinea pigs, tell me about his day,

and enjoy the sunshine. And I am not sure if the shoes were just an excuse to

sit there longer or if they were really bugging him that long. The laces had to

be exactly the same length, that he fixed himself, because he wasn't satisfied

by how I attempted to do it. Then he wanted help tightening his laces, because

he said I did it better than he ever could... a little TLC I think... It did

feel good to be needed I suppose.

>

> Hi Heidi, have to say you listed a lot of traits for Aspergers Syndrome.

(Lots of kids without AS also have some sensory issues.) I'd see if there was a

way financially (or homemade) to get some weighted blankets and vests for home.

Could make a big difference. You'd still have the OCD stuff to work on of

course, but maybe can look at some of his other needs from the perspective of

his having Aspergers and approach them from that way.

>

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[Guest guest]

Hi Heidi, hadn't heard of the Alert Program, so googled it. Had heard of " how

does your engine run " though, or rather read other parents talk about that they

used it. One thing I googled:

http://www.familiesonlinemagazine.com/alert-program.html

Yes, the deep pressure might also help him. You seem to have a great setup for

him at home!

, not my OCDer, had those shoelace issues when he was toddler/preschool

age. For him it was getting his shoes tight enough and watch out with broken

laces (he could pull hard, they'd wear out faster). He even slept with his

shoes on at one time. Had the seam issue with socks too. Does sound like Sam

wanted a bit of TLC with it, I'm sure he's missing you!

>

> Hi

> I have made some small weighted lap blankets for students before, never

occurred to me to do that for Sam. Although he does have his own

" Self-regulation " area in the living room where he can go to " chill out " or

relax, or simply get his engine running " just right " as we have worked on the

Alert Program for a while. Are you familiar with that? He has lots of tools

available there, and has even taken to hanging out in his " mummy " sleeping bag

in there