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,
                                     
                                        see
                                           
                                              what
                                                 
                                                       she
                                                      
                                                              can
                                                             
                                                                     do…

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.