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.

I'll post later about what happens today with the Coordinator. I expect she will be understanding. I really had an awful time this weekend and Jackie was really aggressive yesterday not sure what is up with that. He's having a hard time with summer is the best I can figure. Thank heavens he goes back in two weeks. :p

Thanks everyone, I appreciate your thoughts on this. I really am emotional still. :grouphug:

Dear Pam,
'Sending lots of hugs and good vibes. :hug: :hug: :hug:
Mari

Thanks Mari. :hug: We decided to start the fading process, so we're going to see services change from this behabvior assisting to in home supports again sometime in the next six to eight months I think. It just depends. I still feel like crap about Friday though. No pool today, but maybe Wednesday. Jack is going to take Jackie to join the boy scouts. That will be interesting. :D

Dear Pamster,
It seems that you feel better after talking to the Coordinator.
What does "fading" mean? Does that mean that the hours are tapered until the service stops?
What replaces it.


It seems that the aide and her cohort were trying to control the process when you clearly need to be the one in control of making the decisions.

M.

That's it exactly Mari, they told us we had to use the hours or lose them originally and then the aide was overbooked and we were barely using six hours a week and yet THAT was fine because it was due to her scheduling conflict but when we only wanted 3-4 days a week that was us being uncooperative. OR When she called in and barely made it out ONCE a week due to her having this hard time or that hard time.

At this last meeting they were pushing to come out for more hours and then also during our family time. I just can't stand pushy people because I have trouble standing up for myself. Somehow I was able to send a short non-rambling email about what we needed from them, and tell her we were ready to start tapering off the service, and the lady scrambled to see if I meant totally stop it or fade it as THEY say. It means to taper the services off-they think it's going to take us six to eight months but we want it to end within three months. It's been a real PITA dealing with these people some of the time and okay to deal with them at other times. But still I want my house to be my own again...

so are you saying you don't want the help at all?
I thought they were helpful for jackie.
I am ignorant about this, what were they doing with him? for him? interact?
beth

That is a shame to have to face losing support service.
With my nephew the Aid became a part of the family for all the time she was with us. There was a TSS in school and then the gal that got Josh off the bus, help with dinner, bathing , There were more hours for nights for sitter type care on Thursday.

It did not seem intrusive but like a family memeber tht pitched in and we did not need to address needs,
It was a big supper table. I would co care too for the inbetween until the aide got there. Make supper, home work or some games, supper together. I assume this is not what generally happens, but it worked out really well for my nephew.
di

Pam

Is there a different agency you can use.

Donna

Yeah we are getting In Home Support aides soon to take over for the behavior people, it's just that the behavior service costs the state more so they naturally want to get rid of it. That is why this is coming up right when it did I think. If they try to label us as uncooperative I will FIGHT it tooth and nail. I expect the new aide will be more like what you describe Di, I hope it is anyway, we had it before and it was intrusive then too. Just depends, Jack is going to try to go back to work soon and we'll really need it then. :) Not as angry today and went to a free dental clinic and the dentist saved one of my really badly cracked teeth! So that was awesome. :)

Good for the saved tooth.

And I hope the in home care is much better for you.

Remember to let them do most of the work.

Donna