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…
Awesome. This sums up the dichotomy we live every day! No wonder we are exhausted mentally and physically!!!
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