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

Sunday, April 17, 2011


Good Day RettGirls!

We hope everyone is enjoying the beginning of spring! ... those of us who have experienced it anyway!

This week at we are featuring a Category instead of a product. Our website offers so much and we are still building ... thanks to all of you!

An extremely underused and maybe unknown category at is our Tips! Here you will find those little tidbits of advice that only another RettMom knows. Through trial and error and advice from others along the way we have brought you this category to help with those "What am I supposed to do here?" and hopefully provide a few "Aha" moments.

TIPS: (here is what is there now! be sure send in your tips for us to add in!)

Paraplis Umbrella Holder for Wheelchair-Keep an Umbrella with you at all times. Right on her wheelchair

Heated Throw
- Ward off the chillies after bath or preheat that bed at bedtime

Snuggie-Inexpensive buy almost anywhere alternative to a wheelchair blanket

Fun finger food-Tasty and sensory for snack and therapy time

Huge Self Inking Stamp
-Help her sign her own name

Heat and Bond Vinyl For Bibs-Waterproof your own bibs at home

Diaper Doubler-5-22 oz of extra protection without the mess

Elbow Splint Tip-Homemade Brace

Toy Adapter-Adapt any top to switch accessible for only $7.95

Communication during bath time-Homemade waterproof communication board at bath time

Help with poor circulation in legs-Burt’s Bees Mama Bee Leg and Foot Creme with peppermint oil and rosemary leaf extract

High Top Sneakers
-Leather for stability for those waiting on or not getting Orthodics. Crocs also work great with Afo and Smo’s.

Wall Padding
– to cushion the falls

Using a TV screen for computer monitor

Litterless Juice Boxes

We are sure many of you have incredible advice you would love to share with everyone that we don't have listed. Please do so today by clicking here

Hope everyone has a great week!

Terri V
~For RettGirl

Sunday, April 10, 2011

Nitey Night

Good day RettGirls! And some good nights may be on their way! What is this of which I speak? Can it be? Yes it can and you can find it at in our Product Reviews under Sensory and Sleep!

Do you have a daughter that falls asleep during EVERY car ride but lies in her bed tossing and turning for half the night...every night? Maybe you have toyed with the idea of hiring someone to drive your daughter around for the night?

At, we have listed a possible solution - one that it is working in this writer's home! Soon that checked baggage under my eyes might look like a couple of small carry ons!

The Simmons Beauty Rest Sleep Massager!!! Can I get a "Hallelujah?" This massager turns any bed or piece of furniture into a vibrating massager! Just tuck it under, plug in, turn on and zzzzzzzzz.

I have absolutely looked forever for something that would work and have never come across anything that even comes close. The first night I was skeptical and had a real cranky pants on my hands. I had her Dad set it up, turn it on and tuck her in. I no sooner packed her bag for the next day and went back to check on her and she was snoring. SNORING! Woot Woot! Yes, I am that excited! Thinking about getting one for myself!


From the Company Website: Easy to install, it turns any bed or couch into a massager. Wave, steady and pulse settings allow you to customize your full body massage. Soothing motion pulses throughout your entire mattress, reducing stress and fatigue. Works on all types of mattress's and cushions, couches, chairs, innerspring, foam, or air. Any size mattress or sitting cushions.

I am so excited to share this with you. Here's to many restful nights to come! Link
Terri V~For RettGirl

Sunday, April 3, 2011

Yes/No by Simplified Touch

Good Day RettGirls!

This week at we are featuring the Yes/No HD app for the iPad by Simplified Touch. This app and more can be found by clicking on our iPad review button on our home page or clicking here.

Below you will find a video demonstration of this incredible app and all its features!


Terri V~For RettGirl