Sunday, April 24, 2011

I Wish ... I Could Communicate

Good Day RettGirls!

This week we have a guest blogger, Kate Ahern. Kate is very familiar with Rett Syndrome and is someone we have been working close with, and has been advising us either personally or through her incredible website, Teaching Learners with Multiple Special Needs!

Last week she did a workshop in MA titled Eyegaze for Education-Women and Girls with Rett Syndrome. This week she is sharing her latest blog post with us which features a wealth of information about wish granting agencies.

Just yesterday I had been conversing back and forth with Ms. Ahern about frustration in finding a common ground with my daughter's education team, lack of funding for eye gaze devices, and pretty much anything else we may need for her.

This morning I awoke to her posting a blog on "wish granting" after her telling me there is so much more out there than many people know about. Last night she told me that our daughter's greatest wish is the ability communicate.

You can find her website at under Websites, Communication, and School Stuff! We encourage you to consult her website whenever you need to learn more about anything that comes up about educating our girls!

Welcome Kate Ahern!

Wish Granting Agencies

On occasion a family will ask for information about wish granting for their child. A few things to know include that children's wish agencies generally, but not always, ask that the child be ages 3-18 (sometimes 21), have a life-limiting condition (as documented by an MD), have no prior wishes granted and be able to communicate their own desire. There are wish granting agencies in nearly every country from Canada to Pakistan to Singapore. Every state in the USA has one or more chapters or self-contained wish granting agencies. Some wish granting agencies are for specific age groups, conditions or even have to be recommended by a specific person. Let families know they can search the web, talk to their doctor, social worker or other medical professional for more information.

Here is a resource you can email or print and share:

National Agencies

Wishes for Children and Teens:
  • Sunshine Foundation grants wishes to children from 3-18 who have serious, chronic or critical illnesses or disabilities and child who have survived abuse
  • Children's Wish Foundation grants wishes to children with life limiting diseases up to the age of 18 (children under 3 or who cannot express their own wish enter a program called Young Minds)
  • A Special Wish grants wishes for children with life limiting conditions up to age 21
  • Kids Wish Network grants wishes to children 3-18 who have a life limiting condition (have granted many wishes to children with seizures, Down Syndrome, Rett Syndrome, Cerebral Palsy)
  • Make-A-Wish grants wishes to children ages 2.5 to 18 who have life limiting diseases and who have not had a prior wish
  • The Granted Wish gives wishes to anybody of any age who is in need of a wish

Wishes for Adults:
Wishes for Senior Citizens
Regional Wish Granting Agency Listings
Respite, Camp, Retreat and Vacation Granting
  • Believe in Tomorrow has three adventure programs for bullriding, flying and racing as well as respite and hospital housing.
  • Starlight Foundations Great Escapes allows families with a seriously ill child to spent time together away from a hospital
  • Give Kids The World grants children with critical illnesses and their families trips to the Central Florida theme parks
  • Deliver the Dream creates retreats for families who have a family member with a life threatening disease or disability
Other Agencies
  • A Warrior Wish grants wishes when someone in the military or their family has a life limiting condition
  • Dream A Little designs and install fantasy bedrooms for children with life limiting diseases
  • Room to Dream creates custom healing environments in rooms in hospitals and homes for those with chronic illness
  • MORGAN Foundation offers financial support for families to get to medical conferences and/or for families who need equipment not covered by other sources of funding

1 comment:

  1. So I was pretty obvious that our conversation spurred this post? Actually it was an updated re-post from a few years ago. Thanks for the kind words. Also I wanted to leave the link to the slides that go with that youtube video of my presentation

    If any Rett Group or even just a circle of Rett Families that is within a half-days drive of N. Massachusetts/S.New Hampshire (where I live) would like me to present the workshop again I would be happy too.

    Also look for me at the Rett Conference in Boston.