• 1
• 2
• 3
• 4
• 5
• 6
• 7
• 8
• 9
• 10

"Be brave as your fathers before you!" - Thomas Edison 

Thomas Edison’s admonition for dads applies particularly to those with a disabled child. 

Researcher Barry Carpenter—with a Down syndrome daughter—contends, “Fathers who can discuss concerns with similar fathers help decrease isolation.” What do other dads say?

James Keating, president of Developmental Enterprises Corp. in Norristown, Pa., has a son at a DEC center, who “benefitted from support, occupational therapy, and socialization."

Devastated 
Mike was “late hitting milestones (without) evidence of his problem until he was 3 years old,” Keating recalls. On a brother’s birthday, Mike fell for no reason.

Keating’s doctor requested tests. “The wrist X-ray said Mike’s bone development wasn’t up to chronological age. I was devastated at raising a child that would never do things we think of as ‘normal’.”

Mike, 41, is “happy in a group home attending a daily workshop. Our family emerged with greater feeling for developmentally disabled persons.”

Jim and Mary Keating “didn’t let Mike’s disability be the defining family characteristic. We lived as a family. When he and I are together, we listen to music, weed landscaping. When I run errands, he rides `shotgun’.”

Keating credits DEC for “infinite patience. They’ve helped me cope.”

DEC founder
Bud Kohn’s son Rob has his vocational/habilitation needs met at a DEC center. Bud, a former DEC president, was a DEC founder in 1971. When Kohn knew Rob was disabled, all he knew of Down syndrome was college psychology textbook “names like idiot. At his birth there were few, if any, services for him.”

Help came from the Montgomery County (Pa.) Association for Retarded Children. “Of utmost importance was a wife of understanding, maturity, and support.”

Kohn emphasizes fathers MUST: Accept their child; obtain the best available services appropriate for him/her, and help other families and individuals with a disability.

You’ll cry a lot
In Chicago, Dan Thompson’s 18-year old daughter has Cerebral Palsy. “The day I visited a school solely for kids with disabilities was when our challenges hit. We cope trying to maintain a sense of humor. You’ll be frustrated with doctors/therapists, hate insurers, miss work, be envious of dads who have it easy—you’ll cry a lot.”

Coral Gables (Fla.) Police Lt. Bart Barta couldn't believe Daniel, an “apparently normally infant, would be diagnosed with autism at 3 years old. Fathers of a child with autism go into denial, withdrawal. My first question to Daniel's neurologist was, ‘What can we do to help’?”

Daniel “motivated me to help others. I speak with fellow officers about interacting with people with autism. Daniel has made me a better person. Every day I’ve seen tremendous progress (from) therapy.”

Backup is “knowing God will not let me bear more than I can handle. There’s something about helping others going through similar struggles that can help heal oneself.”

What they are
Lt. Barta’s counsel is:

• Having a disabled child doesn’t make them any less of a person.
• Their ability to make meaningful and significant contributions to our world is endless.

Most of all, he adds, "Love your children for who they are, not for what you want them to be."

Then, there’s Arthur, a psychologist, with an anorexic daughter. His advice is: “Be prepared for the long haul. However, limits are necessary; you’ll have to make choices for the good of your family.”

Try “to disengage emotionally somewhat for more reasoned decisions,” including a good clinical team with “advice that makes sense to you. Understand your child will do whatever he/she can, including lying and manipulating.”

Validate needs
Mel Flitter blamed himself for passing poor genes to son, Sandor. “It was the luck of the draw. The father/parent must explore every avenue to help his child, short of self-destruction, but recognize your best effort is the most you can offer.”  

In his wheelchair in Jacksonville, FL, Herb Drill heads Able Me & Associates. His e-mail address is herbdrill@ableme.com. He has Muscular Dystrophy.