Ayuda: Jared’s Story
by Mayra, Mother
Long Beach, CA
Jared was born with a rare disorder called Dandy-Walker syndrome, which affects his brain and causes intellectual disabilities, severe autism, partial blindness, hearing loss, and motor difficulties. He can only make a few sounds that few understand. Jared is now 16 and has received very little from the regional center over his life, despite his intense needs and his mother’s consistent requests for help.
Jared now has severe behavioral challenges and bites himself regularly because he has no way to communicate. The neighbors complain and the police have been called to their apartment three times. Recently, Jared banged his head so hard that he suffered a serious injury.
Jared’s mother speaks only Spanish and has been a fierce advocate for her son. She has desperately requested direct behavior intervention for him for five years through over 100 emails and phone calls. But the regional center only provided parent training because, as Jared’s mom feels, they think she doesn’t know how to be a good mother.
After years of begging every level of her regional center, including the executive director, Jared was finally approved for direct behavioral services. But now the regional center says there is no provider that has availability. Jared and his family continue to wait for services that he is entitled to.