My Brother, My Self
With skilled and compassionate care from Good Shepherd's pediatric therapists, Tyler and Nicholas Strauss are overcoming the challenges of an inherited disorder.
For most parents, an invitation for their child to attend a birthday party brings gleeful anticipation of cake and ice cream, fun and games. For Kristin Strauss though, those invitations for her son Tyler brought mixed emotions.
"Birthday parties were extremely difficult," she recalls. "Tyler's anxiety was so high that I was lucky to get him out of the car. He would yell and scream and throw himself on the ground. We might stay a half hour and then I'd put him back in the car and I would cry for my little boy."
It's just one of many challenges this spunky mother and her husband, Randy, have faced in raising Tyler, 9, who has Fragile X Syndrome, an inherited disorder causing physical and cognitive delays that's also been linked to autism.
"Imagine what it's like having one child with a disability," says Kristin. "It can be scary, tiring and emotionally and physically draining. Now imagine what it's like to have two children with a disability."
And so it is for Kristin and Randy whose second son, Nicholas, 6, also has Fragile X.
But while life in the Strauss household is anything but ordinary, it is Tyler's and Nicholas's extraordinariness that has blessed family life in unimaginable ways. And, it led the Strausses to Good Shepherd's pediatric therapists, who have helped Kristin and Randy discover the special gifts their two wonderful boys have to offer.
"Our lives and hearts have been opened to so many wonderful things we may never have experienced," Kristin says. "Our children have been a blessing."
Starting a Family
In October 1995, Kristin and Randy Strauss were thrilled to be moving into their new house, a cozy colonial with a sprawling backyard on a quiet cul-de-sac in Salisbury Township. Kristin's women's intuition told her she was pregnant.
In between moving boxes and furniture, she took a home pregnancy test. If she was expecting, what better gift for her husband, whose birthday was just a couple days away?
Sure enough. The test read positive. Elated, Kristin ran out to the drugstore, bought a card from a child to a daddy, wrote, "Love, Baby to Be," and presented it to Randy. Dumbfounded at first, Randy's emotions quickly turned to joy."It was just awesome," Kristin recalls, her brown eyes sparkling at the memory.
What Kristin didn't know was the little boy she was carrying would be born with Fragile X Syndrome. Her pregnancy was a healthy one, and when Tyler was born, everything seemed normal. But the new parents soon realized something was wrong. He stiffened when he was held and tried to fling himself out of his parents' arms. He wouldn't breastfeed. And he had one ear infection after another, requiring surgically-inserted tubes in his ears on four different occasions.
A typical child walks around 9 to 12 months. Tyler didn't start to walk until he was 19 months old. Most children start talking around 12 to 18 months. Tyler didn't talk until he was three years old. A typical child begins potty-training around two years old. Tyler was potty-trained around four.Other problems began emerging - anxiety, sensory difficulties (for example, he doesn't like sand at the beach), poor eye contact, impulsive screeching, hand flapping, processing delays, and poor fine and gross motor skills.
By the time Tyler was 2-1/2 years old, with persuasion from her sister, Shelley Koder, Kristin asked her pediatrician for a referral to Good Shepherd Pediatrics. She had heard many good things and knew this was the best place to get some help. She also enrolled him at Mercy Special Learning Center after her sister told her what a great school it was.
At first, Tyler was thought to have pervasive developmental disorder. He started getting speech and occupational therapy at Good Shepherd. Then, Kristin became pregnant a second time, giving birth to Nicholas.
When Nic was about six months old, Dr. Kathleen Roberts, then Tyler's developmental pediatrician, suggested Nic be brought in for a consultation. When Nic accompanied his brother on Tyler's therapy visits, the doctor noticed Nic didn't seem to be progressing normally. After examining little Nic, she strongly advised that both boys have blood work done. One of the things she discussed with them was the possibility of Fragile X.
On Tyler's fourth birthday, five minutes before the family was gathering to celebrate, Randy and Kristin got the phone call with news that both boys had Fragile X.
"My husband and I barely had time to absorb the news," Kristin says. "Then, we put on our game faces and continued celebrating our son's birthday."
Finding Their Way
Like his brother, Nic has had significant developmental delays. He didn't walk until he was 26 months old. He didn't start to talk until he was five. Potty training has just begun for him at six.
Nic has been coming to Good Shepherd since he was nine months old. Among his challenges was poor muscle tone, which not only affected his fine and gross motor skills, but also made it difficult for him to talk.
"He was just the most delightful toddler in the world," says speech therapist Jodie Moulton. "He would sit for hours and look at book after book after book, pointing to the pictures. He wanted to communicate but he just couldn't do it by normal means. That's when we started using sign language."
Tyler, too, is doing well with help from Jodie and occupational therapist Wanda Kolipinski, who also works with Nic. His attention span has improved, he talks much like any other nine-year-old, and going to birthday parties is no longer an ordeal.
Often, the boys take therapy together with Jodie and Wanda.
"It's been a great experience because it helps teach them to take turns and share," Jodie says. "And Tyler is a role model for his little brother. Nic looks up to him and wants to imitate him. They do really well together."
Tyler now is entering 2nd grade at Harry S. Truman Elementary School with aides and supports, where Kristin says he has lots of friends who treat him just like anyone else. Nic attends Mercy Special Learning Center kindergarten in the morning and then Truman Elementary in the afternoon.
Kristin and Randy marvel at their boys' progress.
"Without Good Shepherd, my kids would not have come as far as they have," Kristin says, noting that Tyler and Nic also get therapy at school. "The people here are so caring. I can tell they love my kids and want the very best for them always."
As their boys are learning, so too are Kristin and Randy learning about their strength as a family, Fragile X and what their boys need to be the best they can be. Kristin and her sister have started a local Fragile X support group and Kristin is a passionate advocate for giving children like hers every possible advantage.
"I can't change biology and denial won't solve our boys' problems," she says, "but we look at the world very differently now, treasuring each and every achievement in our boys' lives more than ever."
For more information on Good Shepherd's programs and services, call 1-888-44-REHAB (73422) or contact us.