When I first talked with Deb about her idea and need behind Stimmi.org, I broke out in goosebumps. Literally. Big, fat goosebumps. Her need was built out of having an autistic child. A need that she identified for the many families affected by having a member that was differently-abled is so real and so big. I KNEW that I had to help her bring Stimmi.org to life.
As a physician assistant, I have taken care of adults with many disabilities such as Down’s syndrome, Fragile- X and Cerebral Palsy. Sometimes they present with a caregiver. If they are new, the caregiver knows NOTHING about the patient, but if I was lucky, they may have brought with them a three ring binder with a single page listed of their medical conditions.
There have been times where I have had patients take a swing at me during these exams (it would have been helpful to know that they really don’t like having their ears touched). And during these exams I have struggled with understanding their communication or some of their body language because of the lack of information available.
On occasion, I work in the ER. On some of those occasions there is the same patient with Cerebral Palsy that has come in. He is so frustrated at times when staff can’t understand him. Imagine if they could quickly listen to his top 10 phrases or be able to SEE photos of his ulcer to know if it is getting worse.
It’s clear that there is something lacking for our disabled patients. A need for better and more concise communication. It’s from that need that Stimmi and our Voice Library were born.
I imagined how helpful it would be for families and caregivers to share videos of the disabled that explained their need(s). I could see how having a better understanding would lead to better, more consistent cares.
THIS is what the Voice Library can do:
Your child is starting this fall with a new teacher. Your new teacher can listen and watch videos of your child and learn about them before they ever meet.
A new caregiver is starting on your team. Speed up their training by having them watch and learn about your child.
You want to go on a date for the first time in 2 years, but your family is afraid of your child’s feeding pump. SHOW your caregiver how the setup works.
Your child keeps using the same hand motion and is getting upset. Others can search the library using the tags you created to find your explanation and understand how to help.
With Stimmi’s Voice Library you can show AND tell others what they need to know to help your child or adult be happy and healthy.