“There are so many workshops, information resources, and people you can talk to at CSH,” said Katie. “The opportunities here are so valuable. CSH has done so much for our family; I never want Gracelyn to leave.”
When their baby, Gracelyn, was about 18-months-old, Katie & Nick noticed she was not reaching the same developmental milestones as other children her age. She had not attempted to communicate verbally, did not respond to her name, and was very disengaged. Suspecting hearing loss as a possible cause, Gracelyn’s parents brought her to Children’s Specialized Hospital (CSH) for an evaluation. Audiology services at CSH ruled out hearing loss and with further testing, diagnosed Gracelyn with autism spectrum disorder (ASD).
Katie remembers receiving the diagnosis of autism for her daughter as heart-wrenching moment for her. She didn’t know any other parents of children with autism to connect with. She felt incredibly afraid and isolated. But she bravely moved forward with treatment, wanting to give her daughter the very best opportunities.
Gracelyn began early intervention services at home a few months before her second birthday. Her early intervention therapist thought she could benefit from occupational therapy as she would require a lot of sensory input and motor planning.
Katie recalls buying Gracelyn a mini trampoline around that time. “She would just bounce and bounce and even stand on her head sometimes,” said Katie. “I didn’t realize at the time that she was doing that to feel regulated.”
At two-and-a-half-years-old, Gracelyn started outpatient occupational therapy at CSH in Toms River. The therapy sessions and CSH therapists’ expert advice for incorporating her therapies at home have helped Gracelyn and her entire family navigate this new journey. CSH helped Katie manage her expectations and find hope in even the smallest successes.
“At first, I set unrealistic expectations for Gracelyn and would get disappointed when she didn’t meet them,” said Katie. “The therapists helped me learn to take it one day at a time and celebrate small wins.”
Parents of children with ASD have their own journey to navigate in addition to caring for their child. Very often, they experience higher levels of stress, anxiety and even depression. While doing everything to provide the best care for her child and working hard to celebrate progress and daily victories, Katie explained that she still experienced moments of sadness as if she was mourning the life that she imagined for her daughter.
The care at CSH goes beyond the patient by involving the entire family in the child’s care plan, giving them the knowledge, tools and confidence they need to care for their child while balancing the rest of the family members’ needs. Katie is so grateful for the support she received from Gracelyn’s therapists at CSH. They not only helped her child, but helped her understand the emotions and struggles that arise from having a child with ASD. "I can talk to them about anything," Katie said.
Katie initially didn't understand the therapies. When Gracelyn had her first session, Katie remembers questioning why the therapists would be having Gracelyn swing on a swing. Her therapist patiently explained each step of Gracelyn's therapy plan to the family, including the science behind the swing. That type of communication meant everything to her.
“There are so many workshops, information resources, and people you can talk to at CSH,” said Katie. “The opportunities here are so valuable. CSH has done so much for our family; I never want Gracelyn to leave.”
When Gracelyn arrived at CSH, she had difficulty following simple instructions and could only focus on one task at a time. She would become upset and unresponsive when given tasks to complete. After two years of therapy, the significant progress Gracelyn has made is evident. She can follow instructions involving more than one step, take the initiative to complete tasks independently, and even complete obstacle courses requiring multiple steps. Additionally, she has achieved the major milestone of feeding herself, which was a significant goal for her mom.
“Every day, Gracelyn surprises me by doing something new. Every child on the spectrum is different, Katie shared. “It opened up so many possibilities once I learned to focus solely on her and not on what other children were learning to do.”
Gracelyn has been seeing the same therapist since she first came to CSH. “As Gracie’s therapist it has been empowering to see her progress in therapy while also forming a strong bond between her and her family,” said Occupational Therapist Taylor Bozan. “Gracie’s mom has been a consistent participant in her care and has shown interest in learning about ways occupational therapy can help Gracie, primarily in areas of sensory integration. Gracie has come so far since starting here at CSH and I am so grateful to have been a part of her journey from the beginning. I am so proud of her and all her hard work in OT. It has been awesome to see Gracie leave every week improving on or accomplishing a new level of skill to achieve independence. Despite all her hard work we always make sure to have fun and swing, which is Gracie’s favorite thing to do in OT!”
Gracelyn loves nursery rhymes and recently began independently making the motions to “Twinkle Twinkle Little Star.” Katie recollected, “Seeing her do that for the first time filled my heart with hope and joy. That’s language. It might not be how I expected us to communicate, but that’s all a part of meeting her where she is and being open to doing things differently.”
Now five-years-old, Gracelyn is exploring the world on her own terms. She enjoys going to the park, swinging, swimming, and spending time at her favorite stores, Walmart and Target. She is also able to initiate activities that she learned in therapy at home and plays confidently on her own and with her little sister, Madden.
“There will always be hope as long as Children’s Specialized Hospital exists,” Katie said. “Some days are tough, but the small victories make it all worthwhile.”
For more information, visit Pediatric Autism at Children's Specialized Hospital.