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Clinton Parents Make Difficult Decision About Their Disabled Son’s Future

Sean Hartigan with his mother Kelly Hartigan-Love, and his teacher, Gail
Giblin, left

The toughest moment for parents of a disabled child is reaching the realization that their child might be better off living away from home.  Kelly Hartigan-Love and Martin Love of Clinton have reached that conclusion about their 11-year-old son, Sean, but that doesn’t make the decision any easier.

Sean, who has athetoid cerebral palsy, is a day student at the Matheny School, part of the Matheny Medical and Educational Center, a special hospital here for children and adults with medically complex developmental disabilities.  He is in his second year at the school, having started in the summer program in 2007.  After aging out of the Jerry Davis Early Childhood Center in Manville, Sean spent two years in a special program in the High Bridge Elementary School; then the Clinton Public School District recommended he attend Matheny.  The Loves have placed Sean on the waiting list for residential placement, and Hartigan-Love acknowledges that, “As a parent, to make that kind of decision is extremely difficult.  But I know he loves it here, and I know when the time comes that he has to go somewhere else and not home, he’ll be safe here because he’s surrounded by people who love him.”

Both Sean and his twin brother, Andrew, were born prematurely when their mother was only 26 weeks pregnant.  Since the family was on vacation in Syracuse, both babies were admitted to Crouse Hospital there.  “Sean was one pound, three-and-a-half ounces,” Hartigan-Love recalls, “and Andrew was one pound, eight ounces.  So, just living day to day for them was a struggle.  In the nursery, Sean’s nickname was ‘prince of the nursery’ because he did amazingly well.  On the other hand, Andrew was sicker.  Sean came home from the hospital when he was four months old, while his twin was still there.  He had strabismus [crossing of the eyes], but I was just happy he was home.” 

But, after Andrew came home, the twins’ roles reversed.  “Andrew started making developmental milestones, and Sean didn’t.  Andrew went from rolling to grabbing things.  Sean wasn’t doing that.  Sean never played with any toys.  That should have been an early indication, but I wasn’t sure; I was just so appreciative he was alive.”  At 18 months, Sean was diagnosed with athetoid CP.  Both brothers came to Matheny for respite when they were about two years old.  Although he has had several surgeries, Andrew today attends the Clinton Public School.  “He gets pulled out for reading, writing and math,” Hartigan-Love says, “ and he gets physical therapy and occupational therapy; he just graduated from speech.”

One of the reasons Sean adjusted so well at Matheny, his mother says, is that, “the nurses all remembered him from when he was two years old and here for respite.”  In fact, it was a special kind of compassion from Matheny’s school nurse, Jean Hajel, that helped Hartigan-Love get through that first respite visit.  “I was crying; I didn’t want to leave,” she recalls.  “I hung around in the school nurse’s office probably for about an hour and a half.  I couldn’t bring myself to leave.  Jean just let me sit there until I was ready.”

An example of the progress Sean has made at Matheny manifested itself on a recent family trip back to the Syracuse area.  “Sean was lying on the floor, and he got up on all fours; and he was rocking like he was going to crawl.  He had never done that before.  He was never able to tolerate anything on his hands because he was tactile defensive.  Putting his hands on the floor without having them in a fist was very difficult for him.” 

Getting Sean to open his hands has been a major objective of Matheny’s physical therapy department, according to JoAnna Skripak, DPT, his physical therapist; but she is quick to point out that, “he had been working on this at his previous school.”   Sean has also been helped, she says, by a new wheelchair.  “He’s been growing,” she explains, “so he has a completely new frame, and we’ve changed the angle of his tilts, and he has a new seat cushion.”  A ‘peanut ball’, a therapy ball that, “looks like a peanut”, is helping strengthen his stomach muscles, and, adds Skripak, “we’re also strengthening his leg muscles by getting him to stand,” helped, of course, by Skripak.

The staff at Matheny, says Hartigan-Love, “go above and beyond.  I absolutely adore JoAnna.  And I get phone calls from his teacher, just to tell me Sean’s doing fine.  When I walk in here, I get such a warm feeling.  This is where he belongs.”

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