Not happy-had a meeting with behavior staff's boss...
 

Decided to remove it but I am still pretty unhappy. :(

Pam about Jackies needs, I can only share some of the things we had with my nephew and all our kids.

The early morning, routines are activity related. The rest of the day is a pace. When dinner hour comes, kids have some of the most stimulating events of the day at the peeking of burn out physically and mentally.

THe parents come home from work, busy activity making dinner plans and eating. TV on, lots of phone ringing. Everything just screams stimuli's.

IF they are coming at supper time, then they can see and verbalize the support service. For my sister she was able to have her care switched to evening and the funds were there to hire an aide. THe aid was with my nephew for years and part of the family.

Lots of suggestions were made to tone down events. THe ringer turned off the house phone, the other son had friends over out side or gone by 5.
There was a tape of calming music played, small water fountain about $10 for it.

I was not part of the pow wow after the observartion but I know lots of positive things for my nephew happened.
The key was identifying the family needs and not the 8 - 4 program hours.

Hope the phone calls help. If not contact his PCP and see what other programs are out there for a bettter fit.
Especially summer hours..
Hope you can calm down,
di

I am sorry tht this happened to you.
It sounds like you are going to be following thru with your compaint and you should. there does seem to be a conflict of interest here.
hugs to you....don't let them ruin a perfectly fine weekend.
did you get to spend it with your mom?
beth

gosh... i am at a loss
 

Dear Pam,

I just feel so bad that you came out of this meeting having to take lorazepam. That speaks volumes to me. I am sorry you were treated so badly. :(

I think Di made some important points, and that perhaps the "content" of what they conveyed to you is something worth considering... when you are feeling better... and perhaps with another agency.

I still wish it had been conveyed in a gentle and constructive way. It sounds like just the opposite and that really bites.

I would probably report your issues about their treatment of you and the aide's period of not showing up for hours to the agency that provides funding, just to protect yourself from anything this agency may report about you. You could mention about the aide and boss being related, but i would avoid expressing any suspicions of nepotism; that could backfire.

I do think you should look into other agencies at this point, and i wish you luck with that.

I hope you feel better soon and find your happy place again.

((( hugs )))

~ waves ~

Pam

I think its something to look at maybe a compromise. You are needing the
aide to come at 3:00 or 3:30 like she did when he was in school.
So maybe then suggest she stay and observe supper. And even maybe
eat with him.

I would also sometimes let her come and take him to the pool. Let her
see how he is doing there. It sounds odd. But she needs to see all
angles.

I'm not one to think she needs to see the breakfast time right now.

Donna

I don't want the aide here when we eat it's a deeply rooted thing not to have someone not eating in your house sitting there in your house when your family is eating. To us this is family time and not a time we can have intruders coming in. I just can't understand why they feel it's so necesary, they have SEEN him eating after school this is no different only he won't hit when they are here. THey don't seem to understand THAT concept either, he won't act up too badly while they are here, PERIOD, that is why it isn't happening when the aide is here. I just want to give up. :(

And if this all wasn't enough, I don't think I won the contest. So I am doubly bummed. Could cry I am so let down by the way this weekend started off and losing the contest. :(

I am sorry pammy,

(((((((hugs)))))))
beth

just a thought...
 

Hi Pam,

I'm sorry this is all so uncomfortable.

i do understand the weirdness of having someone in the house who is not eating with you, to watch you eat. on the other hand, these are exceptional circumstances where Jackie needs help. so i was wondering how to make the two worlds meet...

would it be more comfortable for you if the aide actually dined with you guys? Then it would not be more like having a guest at dinner.

I am concerned that there may be subtle differences in stimuli for Jackie at dinnertime versus when he eats after school. These may not be at all "significant" things in others' perception so there may not appear to be much difference between the two situations.

As far Jackie as not acting up in front of them, i'm even wondering if having the aide participate in dinner rather than just "observe" might make jackie gradually perceive her less as a sentinel and more a part of the process, and then, start to act up so she can see it.

anyway, i figure that would be plan A, and if you are willing to try that, you could set up a plan B in advance with behavior people, where if jackie does not act up at/after dinner in presence of the aide, within say 2 or 3 weeks (or some pre-established period), then the aide's presence at your dinner hours is to be discontinued.

what do you think? would you be open to try something like that? i realize it still means dinner is not as intimate a few nights a week. but maybe a trial is worth it in case there are results?

It is just an idea. No need to offer justifications if you don't like it. YOU ARE the BOSS, and that is that. ;)

Anyway, I hope you are feeling better today. :hug:

~ waves ~

Dear Pamster,
I am sorry about the no good news about the contest. :(

Regarding this very strange stuff about the aide and the boss:
I'm hoping that in a day or two, you will be able to focus not on how they acted but on what is best for you and your family. Give it a day or two. Maybe the situation will be less emotional and maybe you can work out this mess to your benefit somehow.

I'm glad that you came here to vent. I certainly seems that they were pretty close to insufferable. You did a better job than I would have of keeping cool.

M.