Wednesday, March 7, 2012

To Do Today (By Terri)

I love the fact that I live in an age where the internet has made connections possible that otherwise would not have been - I follow a good number of blogs by parents who have kiddies with RTS. Reading their words are a gift to me in so many ways. Addie's mom, Terri, not only has inspiring thoughts but has a remarkable way using words to describe them. She also writes for a website called Hopeful Parents which is worth checking out. I had to steal her latest contribution. It really spoke to me, and summed up much of my daily dilemma...

To Do Today

  • Put her out there
  • Keep her close
  • Orchestrate situations in which she can succeed
  • Sit back, hands off, see what she can do
  • Make annual appointments with multiple specialists per diagnosis guidelines
  • Let her be until and unless she appears to need medical attention
  • Schmooze the professionals and experts in her life
  • Screw the professionals, I am the expert
  • Advocate to affect systems change
  • Don’t rely on systems
  • Contact insurance about coverage for a new communication device
  • Research alternate funding as insurance is unlikely to cover a new device
  • Seek work for pay
  • Continue to work for other compelling reasons and no pay
  • Worry
  • Don’t worry
  • Trust others with her
  • Investigate,monitor, and record the actions of others in her life
  • Remember she is ‘special’ because she is different
  • Remember that she is just a regular kid
  • Respond to insensitive comments with a grace aimed at educating
  • Fling a zinger back when stupid things are said and done
  • Promote inclusive attitudes by taking risks and assuming inclusion
  • Don’t expect acknowledgement of any kind
  • Search for strategies to mitigate her challenges
  • Accept her as she is
  • Celebrate
  • Grieve
  • Participate in typical family life
  • Redefine my own family life
  • Let people in
  • Guard privacy
  • Say yes
  • Say no
  • See what others have done, don’t reinvent the wheel
  • Pave a new path, do it my own way
  • Get involved in everything
  • Take time for myself
  • Ask for help
  • Don’t depend on others
  • Try to work my family into the typical flow of my community
  • Sign on to exclusive disability-related opportunities with those who “get it”
  • Campaign to change words referencing those with intellectual differences
  • Don’t let words get to me
  • Change everything
  • Change nothing
  • Push
  • Pull
  • Act
  • Wait
  • Do
  • Don't

To Do Tomorrow

  • Put her out there
  • Keep her close
  • Orchestrate situations in which she can succeed
  • Sit back,
                      hands off,

Sunday, March 4, 2012

I've been published again

Here is the link to the 2nd article that I have written for a local parent magazine. It is all about Matt and his iPad.

Very exciting - what a privilege to be given a voice on behalf of Matt.