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Jon age 14, Dov age 14


In Loving Memory of Jerry Shestack

Downloads
healing_fw09_extract.pdf
Nonverbal Autism: the Forgotten Half of the Spectrum, by Portia Iversen

August 20th, 2011

 

Dear Friends and Family,

Thank you for visiting the Descartes Institute website. As the founders of the Cure Autism Now foundation and after many years as advocates for autism research, my husband Jon Shestack and I have felt we now need to focus our attention on: "Nonverbal Autism: The Forgotten Half of the Spectrum" (see attached article for more information). These are the individuals who are often called “low functioning” and cannot speak, who have been left behind in spite of the tremendous gains made over the past decade in autism awareness, research and education. Our son Dov is one of them.

 

As many of you know, our son Dov, who is now 19 years old, is nonverbal and didn’t begin to communicate until he was 9 years old. This unexpected miracle left us with an even greater sense of obligation to speak out for those who truly have no voice; the most severely impacted half of the autism population who have profound challenges in communication and behavior and often many medical issues as well. For many years it was thought that all nonverbal people with autism were mentally retarded, untreatable, un-educable and basically hopeless.

 

When Dov astounded us all by beginning to communicate through pointing and eventually typing and using a keyboard, we had to rethink everything we had been told and everything we thought we knew about our son. As it turned out, in spite of his autistic behaviors and great difficulty in communicating, Dov has good cognitive ability. He has been able to receive an education and expand his social and emotional world and although the very act of typing remains a tremendous struggle for him - to be able to communicate and have people understand that he is an intelligent, sensitive person, is worth all the frustration in the world.

 

Dov’s grandfather, Jerry Shestack was always incredibly kind and loving to Dov and sensitive to Dov’s struggles in life. He made him feel welcome and loved, read to him and gave him many books over the years. When Dov finally became a Bar Mitzvah (see this amazing video!) after studying for 4 years, we were all blessed when Jerry could be there with us to celebrate Dov’s amazing achievement. We will all miss Jerry terribly and he will be remembered by many for his life of awe-inspiring achievements, but for us, there is none more meaningful than his role as grandfather, his unwavering kindness, patience and love for our son Dov.

 

The Descartes Institute is a non-profit organization that we created to advocate for those with nonverbal autism. The Descartes Community website is perhaps the only place for people to go where they are allowed to have hope for their nonverbal child, hope for a better future, for improved quality of life, increased communication, a better education and help from others who are on the same journey and will not give up.

 

In promoting the mission of the Descartes Institute I have traveled around the world giving presentations on how to get nonverbal children and adults started communicating, advocating for their right to an education and arguing that lack of the ability to communicate does not prove lack of intelligence, but rather the inability to express it. I have written a manual to assist in teaching nonverbal people to communicate, which is free on the website. I currently serve as an Advisory Council member for the National Institute of Mental Health, where I continue to advocate for research focused on nonverbal autism.

 

Thank you from Jon and myself and from all the families, the teachers, the therapists and caretakers who want a better life for someone they love who is nonverbal with autism. Thank you for caring and for believing in us and our children and thank you for your much needed support as we blaze the way toward a better future for the forgotten half of the autism spectrum.

Click here to visit "Remembering Jerry Shestack" an archive of the many wonderful tributes written about him by his friends, colleagues and family members, as well as obituaries that have appeared in the New York Times, Philadelphia Inquirer and other publications.

- Portia Iversen

 

Please check back as we continue to develop this website, we’ll be adding new materials soon.



The Descartes Institute is a 501-3C corporation
registered in the state of California in 2007.
Email: contact@descartesinstitute.org