Letter of expectations for qualifying Physical Therapist!

Is this something you qualify for and are willing to do?:

  My daughter is two years old with Spinal Muscular Atrophy. I am currently in the process of finding a therapist that will be most beneficial to my daughter. She has been involved in therapy for almost 10 months now. And we have found it to be so important to her. However, as we all are people of different opinions, beliefs, ideas, and simply different ways of doing things, there has developed an extreme conflict between her current PT and myself. We just disagree in the way her case should be handled and through ignorance she has gone over my head in making decisions for my child. Why this is I don't know or understand all the whys and whats but never the less, I cannot allow it to continue. I also want to make sure that from what I have seen and learned from all past experiences, that I pick a therapist how that will fit more into the category of what I am looking for to care for my daughter.

  Some of the things I am picky about:

  1. I expect her therapist to listen and understand my analysis of my daughter. I am with her 24/7. I don't work. I only go to school part-time. I have dedicated my life to her care and research to her care.
  2. I fully believe that whatever she can do now, she needs to do. If she needs medical equipment for assistance then I expect the therapist to be right on the paperwork to get it accomplished.
  3. I believe that the doctors and therapists do not have a full understanding of my daughters disability and that there is a lot of info out there to be able to understand it more than what they know locally anyway. It is my desire to find a therapist who is willing to go that extra mile to research or except my research findings, to understand SMA as much as is possible to be able to give my daughter the absolute best care possible giving her awful and dreadful disability.
  4. I am very practical. I want her to be safe, but I want her to do as much as she can on her own. I believe in equipment that will be there for her if she needs help or protection but will not further handicap her. (She has a degenerative neuromuscular disorder.) I have seen with my own eyes the weakening that occurs when an area is not exercised (meaning kept active).
  5. I want someone who can relate and adapt to my daughters personality. If she don't feel like you are her buddy and that you don't want to hang out and play with her then she will rebel against you.
  6. I want someone who is aggressive and good at communicating. Someone who will reach deep into their knowledge to share with me options that would be of interest to me for use with my daughter. Someone who believes in trying instead of saying I don't know if she can do that or not and then not end up doing any thing at all.
  7. Someone who is willing to except my right to choose my own values for my family including my daughter. Someone who will guide and advise but step back when I make a decision that may be different from what they would choose.
  8. Someone who will take the time out to watch and observe me, get to know me and be able to trust that I will go to what ever extremes necessary to give my daughter the most benefit out of her life.
  9. Someone who will follow through with their promises and be efficient with our plans and goals for my daughter.
  10. Someone who has the time to serve her needs. Or someone who is willing to invest a little of their own time to make sure that nothing is left out to shuffle around and get delayed or worse lost.

Her therapy schedule:

Tuesday-8am to 9am developmental therapy

Wednesday-8am to 845am PT

                    9am to 945am Speech therapy

Thursday-8:15-9:00am OT

Friday-8:00-9:00am Aquatic therapy

  I imagine that I may have left a thing or two out. But you get the general idea. If this sounds like a case that you will be interested in participating in. please email with any further questions or concerns you may have. You can call me between 1 and 3 during the day or 9 and 11 at night. I live in a transitional housing unit so it is a pain to call me, but if you follow these directions you'll be fine:

Thank you so much for your time. I look forward to hearing from you so that we may be able to meet and discuss my daughter's treatment with you.

 

Sincerely,

Brenda Brames

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