Mother advocates for children with autism
Sixteen years ago, Tina Hendricks welcomed a daughter. At first she was busy with diapers, feedings and picking out pink frilly dresses.
By six months, however, she knew something about Mary was not right.
“I remember taking her to a friend’s house. She had five children and I expressed some of my concerns despite the doctor’s reassurance that Mary was doing fine,” Tina said. “A few months later we visited again and my friend could see a drastic digression in Mary’s development. She told me that my suspicions were right and I should take her back to the doctor.”
By one year when most toddlers have already started to walk, Tina and her husband watched as their daughter became more distant and despondent.
“She started showing a slow deterioration between 6 to 12 months,” she continued. “The doctors first diagnosed Mary as having Global Developmental Delay disorder, then at 13 months they upgraded her condition to Pervasive Development Disorder. I had no idea what that was. All I could say was thank heaven she doesn’t have autism.”
By 15 months, there was a drastic downward spiral in Mary’s cognizance and recognition.
After more tests the doctors informed Tina and her husband that Mary was on the severe end of the autism spectrum.
“No, no that can’t be,” Mary recalled thinking, “She isn’t like Dustin Hoffman in Rainman at all.”
At that time the movie was the first public reference to a disease that now affects 3 to 6 children per 1,000, according to the National Institute of Neurological Disorders and Strokes (NINDS). Of those children affected, 75 percent are boys.
“That was the moment that life became different and I knew it would never be the same. It was like a death,” Hendricks reflects on the prognosis that changed her world. “Mary’s birth dad left after the diagnosis. So I was really alone, which added to the stress.”
“This is a really isolating disease because it affects everyone so differently,” she continued. “There are no hard and fast rules. What works for some may not work for someone else. There is a lot of work to be done to help these kids.”
At the time of Mary’s diagnosis, information and resources were so sparse the pediatricians could only tell Tina to take her baby home and love her the best she could. They also told her that Mary would need to be institutionalized by the time she was 8 years old.
“I told them my daughter will never be institutionalized.” said Hendricks, a resident of Alta. “I will do what ever it takes to make a better life for Mary.”
With that in mind, Hendricks decided to get the ball rolling to develop more advocacy and support for parents with children diagnosed with autism.
“There were about five or six families along with a few professionals in Sacramento who started a grass roots movement called FEAT, which stands for Families for Early Autism Treatment,” she said. In 1997 FEAT was able to get a large grant to help establish the M.I.N.D institute at U.C Davis. FEAT currently assists more than 600 children with Autistic Spectrum Disorder as well as Asperger’s Syndrome.
Many of the children in that first group are now functioning as normal teenagers and the autism label has been removed, Hendricks said.
“All the things I worked for and advocated so hard helped others, but didn’t help Mary,” she continued. “You go through a grieving process because what dies is the hope you had for the future of your child. I wouldn’t have made it through without my faith in God, a church family to lean on and the support of other parents who are going through this with their kids.”
While many parents feel limited by the restrictions that having a child with autism puts on them, Hendricks has set her heart on finding a healthy balance.
“No matter how severely disabled a person is, they are still valued and can participate in giving to others.” she said.
In fact, she took Mary on two church sponsored disaster relief trips to New Orleans following Hurricane Katrina.
“Mary needs to serve and feel needed, too,” she said. “Even though she has a disability, she needs to give back to others and be a part of society in her own way. Often people with disabilities are discouraged from serving, instead of always being on the receiving end of care giving. I have always tried to travel with Mary. While I don’t take her everywhere, I try to find a balance about what we can do.”
3/5/08 – by Marci Seither, Colfax Record correspondent
