What does the future hold?
Here at Robbie's World Foundation we dream big!
Here are the things we are passionate about pursuing in the future.
autistics find their voice.
RPM and S2C
Cindy is the host of "Spectrum Perspectives" podcast. On the show she interviewed several parents who have sons that are non-verbal, non-speaking or unreliable speakers. They all learned to communicate using Facilitated Communication, or RPM. (Rapid Prompting Method) Another method is called "S2C" (Spelling to Communicate). Both methods use a stencil board and the student taps or points to letters to spell. It uses their gross motor skills as opposed to the fine motor skills needed to type or write. They also "presume competence" and teach kids at appropriate age levels, rather than treating them like babies.
Since Robbie was completely non-verbal and Cindy had to guess what his wants and needs were, finding out about RPM was huge. If only they had learned about it ten years ago! After seeing the tremendous results other families have had she has made it her mission to spread the word! She says "It's too late for me to do this with Robbie, but it's not too late for everyone else. Please just try it. Do it for your child."
RPM and S2C are considered controversial, but we believe that parents should be able to try any method they can that might work for their child. One of the most frustrating parts of autism is not being able to communicate. RPM gives them a voice! And once they find it, the whole world opens up for them and for their families too.
A future goal of Robbie's World Foundation will be to bring RPM to people by possibly renting a facility and providing a place for autistic children and adults to come learn to communicate. It would also create the opportunity to pay for people to be trained to teach RPM.
Here is a roundup of the interviews Cindy did with moms talking about how their sons began to communicate using RPM.
Soma-Inventor of RPM part 1
Soma explains how by using RPM with her own son he learned to use letter boards, then learned to write, then type and now speak.
Katie and Houston speak at the Lemonade Retreat
Katie teaches mom all that she has learned about how Houston's brain works. Later Houston joins us and communicates using RPM.
Alexandra has two autistic, non-speaking sons who learned to communicate with S2C. She just opened a facility where she will teach others to communicate using this method.
Soma-Inventor of RPM part 2
Soma explains the "mind-body disconnect" and how RPM helps non-verbal people to communicate.
Katie and Houston
When Houston began to communicate with his mom using RPM what he told her blew her mind!
Create housing for adults with Autism using a Farmstead model.
One of the biggest concerns families have is "Who is going to take care of my Autistic child after I'm gone?" Cindy knows this all too well. So do the moms on her team who all have autistic sons, as well as the familes we help here at RWF. Robbie lived in several different group homes and we know all too well that the system is seriously lacking.. His experiences were not good and we want to create a place that our loved ones would thrive in.
Robbie was on a waiting list to get into a home and was number 4.555 on that list back in 2011. That number has probably quadrupled since then of the amount of families who need help in New Jersey. Next he had to be moved up to an 'Emergency List' to get into the home. When Robbie was diagnosed with Autism 1 in 10,000 kids had Autism. Now with 1 in 32 kids being diagnosed on the Spectrum, a tsunami is about to hit of families who need help. Proper housing with trained staff is a major need in the state of New Jersey.
We know this is a HUGE dream that may seem impossible, and will take probably 20 million dollars. But others are doing it. If they can do it so can we. We want to create homes in a farmstead model, and Cindy has interviewed several parents who have built communities with this model in other states.
We especially love the model of "Benjamin's Hope" in Michigan, which includes using RPM plus has a faith element with a church on the property that is open to the community. After someone donated many acres of land, Benjamin's mom fundraised millions of dollars to build Benjamin's Hope. If God can do it for her, he can do it for us here in New Jersey!
We haven't even begun and are only in the dreaming stage. We are praying for land that can be built on and the resources to make this dream become a reality! Dream with us and pray for us!