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This is ALL THINGS CONSIDERED from NPR News. Im Melissa Block.
Having a child with autism can turn a parent's life upside down. And a new survey shows it can profoundly affect the lives of grandparents, too, from where they live to what they do with their retirement savings.
NPR's Jon Hamilton reports.
JON HAMILTON: It doesnt take much to get Carol Cutler talking about her grandsons.
Ms. CAROL CUTLER (Nurse): They are the light of my life. They are a delight. I love them so much. And there's just a tender spot in my heart as I see them struggle with the things that parents of neurologically normal children take for granted.
HAMILTON: Things like learning to speak or socializing with other kids. Cutler's older grandson, Isaac, is almost five now.
Ms. CUTLER: When he was just past two, he lost his language skills rather abruptly.
HAMILTON: The diagnosis: autism. And his two-year-old brother, Elijah, also has begun showing signs of the disorder. Cutler says her daughter, Carrie, has done an amazing job caring for the boys.
Ms. CUTLER: But she is sleep-deprived. She is stressed. These children have medical issues that need to be addressed. The have occupational therapy. They have physical therapy. They have speech therapy. There is a marriage, you know, to be considered. Her husband works nights.
HAMILTON: So, Cutler has rearranged her life to help out. And it turns out thats not unusual.
Dr. PAUL LAW (Director, Interactive Autism Network, Kennedy Krieger Institute): Grandparents are very involved.
HAMILTON: Paul Law directs the Interactive Autism Network based at the Kennedy Krieger Institute in Baltimore. The network conducted an online survey of more than 2,600 grandparents. Law says preliminary results show that nearly a third of the time, grandparents actually recognized the signs of autism in a child before the parents did.
Dr. LAW: It makes sense because grandparents have the luxury of having seeing their own children grow up. They know what normal development looks like.
HAMILTON: And they may notice subtle changes because they dont see the child every day.
Connie Anderson also worked on the survey. She says it showed that once a child is diagnosed, grandparents act.
Dr. CONNIE ANDERSON (Online Community Facilitator, Interactive Autism Network, Kennedy Krieger Institute): Seven percent said that they combined households with the grandchild's family to provide help of whatever kind. It might be that they lived in a better school district. It might be that they were going to be the primary babysitter. Fourteen percent moved closer but not in.
HAMILTON: Anderson says more than half of all grandparents reported contributing money every month to help a grandchild with autism.
Dr. ANDERSON: I actually had people say things like - one grandfather said, we are paying for services that aren't covered by health insurance. We have spent our retirement and we would do it again.
HAMILTON: And grandparents also do everything from watching a child a regular babysitter couldnt manage to helping with treatment decisions.
Carol Cutler still works full-time as a labor and delivery nurse at a hospital near Dallas. But she's a large presence in the lives of her grandsons who live about an hour away.
Ms. CUTLER: I met my daughter yesterday. She had a pediatrician's appointment and taking both of them by herself to the pediatrician; they're a little hyperactive so it's kind of a handful.
HAMILTON: Cutler says she also invites her grandchildren to stay with her sometimes in order to give her daughter and son-in-law a break.
Ms. CUTLER: I try to keep one of the boys or both of the boys and give them a little time as a couple together because obviously there's not much of that for them.
HAMILTON: Cutler says the boys' other grandparents also do a lot to help the family get through. She says it's no surprise to her that grandparents change their lives if a grandchild is diagnosed with autism.
Ms. CUTLER: No matter what happens in their lives, they are my grandchildren. Part of me is in them. You know, my daughter had these children. She is my flesh. They are her flesh. So, you know, there's just nothing more precious in your life than your grandchildren.
HAMILTON: And Cutler says her grandsons have made it clear they feel the same way about her.
Jon Hamilton, NPR News.
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