Between the age of four and six months, Peter's family became concerned with his development. He was not moving his arms or kicking his legs, and was unable to control his head. Having two other children, Peter’s parents, Susan and Christopher, knew they should take him to their pediatrician to find out more. During a check-up, Susan mentioned her concerns with Peter’s motor skills. His doctor recommended that Susan call Heartspring for an evaluation and schedule an appointment with the developmental pediatrician. When Peter was nine and a half months old, Cheryl Jabara, physical therapist at Heartspring, evaluated him. She recommended he begin physical therapy and that he also receive evaluations from both speech and occupational therapists.
Peter started physical therapy with Cheryl in March 2009 when he was 10 months old. He had very few gross motor skills at the time. He wasn’t doing the typical nine-month-old activities; he did not like being on his tummy, he was not rolling or sitting by himself and had difficulty with little things like head control. Although Peter was a “floppy” little boy, he had a lot of smiles to give.
Heartspring’s Developmental Pediatrician saw Peter in August 2009. Prior to this appointment, Peter had not been given a diagnosis. After a few months of blood work, tests and an MRI, Susan and Christopher had their answer. Peter was diagnosed with Fragile X syndrome in January of 2010. Fragile X is a genetic syndrome which effects physical and intellectual skills and can present with emotional and behavioral features which range from severe to mild in manifestation. Susan and Christopher received the diagnosis over the phone on their way back from the genetic doctor. Susan remembers writing everything down and then going home and feverishly searching the internet for more information on the syndrome. His family has been incredibly supportive and been tireless in their follow through with his home program activities since day one.
Because of his developmental deficits, Peter has been receiving speech and occupational therapies in addition to physical therapy.
Peter was 12 months old when he started occupational therapy in May 2009. At that time he had severe deficits with fine motor, visual motor and sensory motor skills. Now almost one year later Peter is doing all sorts of wonderful things. He is currently working on puzzle skills, manipulating cause and effect toys, sorting toys and coloring skills. “He is such a happy and loving boy,” said Teresa Young, occupational therapist. “I am looking forward to watching him continue to grow.”
In June 2009, Peter began speech therapy at Heartspring with very little to say said Diane Gough, his speech-language pathologist. Although he is still not verbal, he can use signs to help get his needs and wants met on a more consistent basis. When children need to communicate but don’t have words or sounds signing is the method used to increase their communication skills. Diane also uses hand over hand assistance to help children like Peter get what they want until they can sign on their own. “We can’t make him say words or sounds, but with this assistance Peter has become a good communicator with signs,” said Diane. Peter’s family could always tell when he was happy or not with something but now that he can use signs he can be more specific. He can get a lot of cookies when he continues to sign “more”. Diane is also working on his feeding skills. Finding ways to decrease his oral sensitivity and increase his chewing skills has enabled Peter to quit eating all pureed foods and experiment with more foods that his family routinely eats. It will take some time but children like Peter almost always become verbal and better eaters. The important thing is that Peter’s family realized that early intervention was important for Peter to acquire the skills he needs to succeed.
He has come a long way since last March. He sits by himself and loves to spend time stacking and unstacking buckets. After lots of hard work, Peter is crawling everywhere and now starting to take his first steps. Cheryl is now focused on getting him to walk greater distances as well as getting into standing without help.
Heartspring does more than just help Peter according to his parents “Heartspring is our second home,” said Susan. “Everyone commends us for getting early intervention for Peter and we commend the people at Heartspring.” Peter first waved when he was 18 months old to Lacy, the Heartspring front desk receptionist. For quite awhile she was the only one Peter waved at. “When you are at Heartspring you are a part of the family. You are loved and appreciated with warm hearts.”
Susan and Christopher have accepted Peter’s diagnosis and are doing everything they can to help him succeed. They have been linked with other families who have children with Fragile X syndrome and have found www.fragilex.org which gives them information and support. Peter may have different abilities than others, but at Heartspring, Peter is Peter and nothing else matters.