I rec'd a call from one of the many SWs.....

Discussion in 'The Watercooler' started by timer lady, Jun 8, 2010.

  1. timer lady

    timer lady Queen of Hearts

    that are part of kt & wm's teams. She was quite frustrated with me when I questioned something & asked something else.

    I was told in no uncertain terms that "I approved everything in our last team meeting & she felt I was treated with the utmost respect & that my wishes were being honored" I was also informed that the "team" agreed on this route & took into account my concerns. Sounds like I may no longer be a part of the team.

    I have to tell you I have no clue which meeting or what was discussed. So now I need accomodations to function in these quarterly meetings.

    My brand new advocate (the mentor is someone else) @ the Brain Injury Association talked me through my tears of anger & frustration. She then went onto sending me a release of info to a member of the team so that my situation is taken into account. She feels the team isn't recognizing the cognitive disability along with the significant hearing loss that makes it overwhelming to attend a meeting of this sort. Additionally, she suggested I get a smartpen to record meetings.

    She's contacting our mental health CM & having the accomodations needed put into writing. She wants the teams to understand the level of pain & fatigue that make it difficult at best to sit thru such long meetings. She wants me to have time to listen to the recorded meeting so I can make an educated decision - nothing on the spot. I have a quarterly staffing for wm coming up on the 15th - ick!

    I got off the phone feeling a lot less frustrated & angry. A bit more optimistic that someone will advocate for me so I can do the same for the tweedles.
  2. klmno

    klmno Active Member

    That's a good idea- I also like the one about having some time before making a decision rather than having to make one on the spot. If the team works anything like IEP teams in my jurisdiction, they very well might be using your disability as a cover for making decisions on their own, then expecting you to "buy into them". Maybe you really aren't catching every detail in meetings- I don't have your problems to contend with and I know I don't catch everything- still, when there's only one parent in a room full of people just trying to do a job, it's only reasonable to give the parent time to think about what really is in the difficult child's best interest before committing to anything, in my humble opinion.

    I'm glad you have someone in your corner to back you up on these things and advocate for you.
  3. susiestar

    susiestar Roll With It

    I am glad you are getting help with these things. I am sure that the "team" is using your problems to do what they want, regardless of whether it is in anyone's best interest. It is nice to see you being a warrior in regards to your own needs as well as in regard to the tweedles.

    No way should they want you to make decisions on the spot. NO parent should, even if they don't have disabilities. It is very common to not grasp everything said in a meeting. How often have you made several points in a meeting only to find days or weeks later that the rest of the team has forgotten part of them?? It is probably more frequent with your teams than it would be with others because there are so many people involved because there are 2 kids.

    Don't let them bully you OR kick you off of the teams. You have every right to be there. Period.
  4. flutterby

    flutterby Fly away!

    Linda, I am so glad you found the Brain Injury Association. They are quickly becoming an excellent resource for you.
  5. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I agree with Heather, I really like this mentor-sounds like she is on top of things!:)
  6. KTMom91

    KTMom91 Well-Known Member

    Glad your mentor is offering you some helpful ideas. Hubby has one of those smartpens, and absolutely loves it. Not only does his record, if you use the notepaper that comes with it, it records everything you write down and then you can load it into the computer. I don't remember what brand, but I can ask him if you're interested.
  7. susiestar

    susiestar Roll With It

    I think the brand is Lifescribe, or Livescribe. They are supposed to be awesome.

    If you take notes in one of their notebooks it also records what is going on around you. Then you can go back and touch an area of the notes and it will play the recording of what was being said while you were writing. It should be awesome to help with what you are going through.
  8. busywend

    busywend Well-Known Member Staff Member

    I am sorry you had such a rotten experience. I hope your advocate can help smooth things over and make life easier for the next meeting.