Sue Hodess plays with her sons, Andy (left) and Jay, as they relax on a hammock at their West Bloomfield home Oakland Press photo/Jose Juarez

July 13, 2003
West Bloomfield Township resident Sue Hodess, who has two autistic sons, has done well to maintain an ironic sense of humor.
"I used to laugh because I'd think: 'There's not a lot of pressure here. I just can't die,'" the 41-year-old mother said.

She and her 42-year-old husband, Ron Hodess, have by no means been spared any degree of the grief, frustration, exhaustion and desperation many parents of children with autism experience. But at the same time, they have done their best to celebrate the joys any parent experiences.
But it's been a struggle. Their 10-year-old son, Jay, was diagnosed with the developmental disability at age 3. In addition to exhibiting common characteristics, such as delayed speech, impaired social skills and intense and prolonged attention to a single object, Jay would scream or cry for hours on end. Sue said she long suspected the problem was something other than colic.
"When he was finally diagnosed, it was like, 'Thank God, we know what it is now.' "
Yet, that discovery was less than uplifting.
"You just want to be a soccer mom, and suddenly you've become a therapy mom," Sue Hodess said.
Her reaction was similar to that of many parents who realize they may never see their child achieve things parents typically hope for, including graduating from high school, finding a career and raising a family.
For Vicky Debold, a Royal Oak resident and mother of an autistic son, the diagnosis was a heavy burden.
"It's devastating news," she said. "I don't think the blinds went up in our house for three weeks."
The Hodesses experienced this a second time when their other son Andy, now 7, was diagnosed at age 2.
But any expectations they might have acquired in having cared for Jay flew out the window.
"With Andy, it was the complete antithesis of Jay," Sue Hodess said. "He was just mellow and passive, but again, there was no language development."
Andy's arrival broke precedent with what, until recently, was accepted as common knowledge in the autism community - namely that autism does not strike twice in the same family.
While some families with a single child with autism might be able to plan outings either with or without that child, the Hodesses have found such plans much harder.
The many sensory issues that troubled Jay made even short excursions outside the home nearly impossible.
"We always needed an exit strategy because, at times, he would be absolutely inconsolable," Sue Hodess said.
Though there have been challenges along the way, Ron Hodess does not see his role as much different from that of other fathers.
"I think there are so many things that are the same as raising any two boys," he said. "Everybody seems to have their own issues, and we just treat these as ours."
Sue Hodess, the president of a local financial advisory firm, and Ron, a partner in an area law firm, have fortunately been able to provide both Jay and Andy with numerous forms of therapy.
"It's funny, because it's like I have more of a staff at my house than I do at my office," Sue Hodess said. "My neighbors, I'm sure, are convinced we're running something illegal because there are cars in my driveway all the time."
As a result of the therapies and educational services Jay has received, he has shown improvement in his behavior.
Andy, however, has changed from the "peach of a child" he once seemed to be.
"The mellow child has become a very difficult child - very pushy, very easily frustrated," Sue Hodess said. "He has no communication, which is the root of the problem."
Between the ages of 4 and 6, Andy rarely slept more than four hours a night.
"And think, at 3 o'clock in the morning, he's completely hyper - he's just bouncing off the walls," said Sue Hodess.
She added that because Andy has no communication skills, attempting to change his behavior through therapy has been frustrating, particularly when he is trying to communicate a need.
"You can't just say, 'I know you're upset, but I can't help you now,' " Sue Hodess said. They might as well be speaking a foreign language.
Jay, however, is responding well to applied behavioral analysis - a method using a system of rewards to train autistic children to use acceptable means of communicating.
Life for the Hodess family is not all challenges and frustrations, however.
Breaking another stereotype, both Jay and Andy are capable of communicating affection.
Jay just enjoyed a birthday party.
"We celebrate milestones that typical families would completely overlook," she said. "We celebrated the time that Andy learned to hold the spoon in the right way and the time when Jay learned to clean up after himself."
Even situations some parents would consider troubling have been sources of joy, such as a recent incident in which Jay and Andy were wrestling with each other.
"I told a friend of mine it's the most beautiful thing I've ever seen, because normally they're two little islands," said Sue Hodess. "There is some little bit of communication evolving between them, and I'm so delighted to see it."
Ron Hodess said such experiences are priceless because he and his wife choose to look at them that way.
"I guess I'm the kind of person that sees the glass as half-full, or even that it's always full - half-water and half-air."
Beyond both the joys and the frustrations, Sue Hodess admits to a lingering anxiety.
"There's always a pressure in my chest - I call it the touch," she said. "Down the road, I know Andy may need to be with me forever, and that's difficult. Jay may be able to live independently with some support, but you just don't know."
She added, "I think when I get in the most trouble is when I look at my life maybe five years from now.
"For my clients, everything is about long-term planning. But, for me, I don't even want to look past the next five days."
Sue Hodess recently began a college tuition investment policy for Jay, despite the fact that he may never be able to use it. She said she did it as much for her own sense of hope and peace of mind as for her son.
Ron Hodess said he does not have as much trouble with the future, relying on experience that tells him a positive attitude will help make the best of the life he's given.
"I believe you play the cards as they're dealt, and I'm a pretty good card player," he said.
They work hard to support each other. So far, they have beaten another dynamic that affects many parents of children with autism - a high divorce rate.
"This could have broken the family apart, but it hasn't because we've worked at it," Ron Hodess said. "It's like any relationship. The more you work at it, the more likely it's going to last."
Sue Hodess added, "Ron and I pretty much high-five each other at the end of each day, because we know we've made it through another one."