Fathers work with, benefit from Down syndrome group
St. Louis Daily Record & St. Louis Countian, Nov 26, 2007 by Dan Schreiber
Attorneys Larry Mass and Barry Haith shared a similar experience when each learned his newborn child had Down syndrome -- they were overwhelmed.
"I didn't know how to act," Mass said about the birth of his daughter Paula, now 24. "She was just born. I was told when she was just a few hours old."
That feeling subsided with time, though, and was replaced by pride, the two fathers said -- just like that of any other parent.
The experience led Haith, with the law firm Lathrop & Gage, and Mass, a solo practitioner, to the Down Syndrome Association of Greater St. Louis. The nonprofit offers counseling and awareness training for people with Down syndrome and their families. Mass is a former board member and chair for the group and Haith is currently a member of the board.
With more sophisticated testing available, expectant parents are finding out earlier than in the past if their child has the congenital condition.
"There is a huge amount of support [now] for new parents, whether they know for sure or not that their child has Down syndrome," said Debby Rally, the manager at the association's office. "It helps them first with getting over the grieving process that they're not going to get this perfect baby."
Experience mentors
Haith said the adjustment was not easy when his now-2-year-old son Elijah was diagnosed, but the association helped him cope.
"It's the one safe harbor when facing all those challenges," Haith said of the association's counseling program, which puts more experienced parents in touch with new or expecting parents. "It's comforting to know people have faced those challenges and addressed them successfully. It's sort of leading by example, seeing another family do these things well."
Mass described a similar situation when he found out Paula was diagnosed with Down syndrome.
"I was told when she was just a few hours old," he said. "That counseling support is lasting, and it is exceedingly important as you go through different phases."
Mass would become president of the association's board of directors, a position he held more than 20 years ago. Back then the annual budget reaching $12,000 was the mark of a good year for the organization. Today the organization is exponentially larger financially and in total scope with an annual budget of $383,000. It serves 2,000 people in the region, both new families and older individuals with Down syndrome who may have been ignored in the past.
"There are probably more out there, and more and more the over- 30 crowd is coming forward." Rally said. "Those were the ones who never went out of the house. Maybe as recently as 20 years ago, doctors told parents to institutionalize children with Down syndrome because they'd never do anything, they'd never be anything. But life is different now and they're coming out in the community."
'Doing more'
Mass never followed the institutionalization trend and said related issues were never a problem for his daughter two decades ago. Haith said he is grateful his son was during a time of more resources and opportunities for people diagnosed with Down syndrome.
"We're lucky that Eli was born in this era and not 30 or 40 years ago," Haith said. "People now understand if you give the appropriate developmental tools, it's remarkable what anyone can do.
"Even people who were born typical can have significant delays if they are ignored. If given a chance, there are incredible heights ... folks can reach. It's just about opening doors that were closed before."
Those doors seem to be staying open longer with time, said Mass, whose daughter has been successful volunteering and working around town.
"We're doing more work to help young adults," he said. "Before, you would see parents drop out of the organization once their child got older, but I don't think we're seeing that today."
Haith is hopeful he can bring the organization to new heights and enjoy some of the lighter aspects of parenthood.
"The emotion that I went through was a concern about doing everything the right way, overwhelmed at how much I needed to learn," he said. "But once all the worries subside, you realize you won't be a perfect parent and you just do the best you can."
Copyright 2007 Dolan Media Newswires
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