Rate of individuals with autism is higher for boys than girls. Out of 68 children one of them are diagnosed with Autism Spectrum Disorder in the United States. This disorder has no cause nor cure.
The diagnosis is devastating for parents who see transformation from a "normal" smiling baby to a child who can no longer look them in the eye, talks or embraces a loving touch.With a huge field of information which is good bad and manipulating, parents are always confused not knowing what to do, where to go and what is best for their child.
Two mothers, Cathy Martinez and Vicki Depenbusch, recall that perilous trek more than a decade ago when their sons, Jake Martinez and Jacob Depenbusch, received diagnoses of autism.
Autism numbers have exploded, since then. And these moms are among a growing number of parents who say help and support must be easier to find. To overcome this, Lincoln's Autism Family Network in Nebraska partnered with The Arc of Lincoln to create a full-time program director post -- evenly divided with 20 hours a week for each organization earlier this month.
Depenbusch holds the program director's position; Martinez is president of Lincoln's Autism Family Network. Earlier parent organizations like AFN and Autism Speaks were run entirely by volunteers who were usually parents of children with autism who are standing up for their kids and those of other overwhelmed parents.
Martinez, who provides child care out of her home, recalls how she had to give up work time, as well as many evenings of family time, to attend legislative meetings and hearings on behalf of children with autism.
"Parents now will have those resources at their disposal," Martinez said in reference to the AFN program director. "For the first time in 10 years, there is a place we can go. Autism parents feel isolated," she said noting how tasks most parents handily address from finding day care, to toilet training, to navigating the individual education plan (IEP) or learning more about what services are and are not available in Nebraska, are much more difficult for autism families.
"They often don't know where to turn," Martinez said. "Now we can shift them to the office." There they can learn about the only approved form of therapy -- Applied Behavior Analysis, health insurance coverage, disability waivers and numerous other resources that often are embedded in a bureaucratic maze.
The program director is a point person for families, as well as other autism organizations, Martinez said. With the start of the school year, Depenbusch has been working with teachers so they can better work with students with autism.