Empowering Caregivers of Children with Developmental Disabilities

On April 9, 2014, the Children's Evaluation and Rehabilitation Center (CERC) hosted its second annual "CERC Parent Workshop: For Parents of Children with Disabilities." The full-day program was developed by CERC staff with input from parents, designed to provide practical information for parents and caregivers of children with special needs. In recognition of the diverse community that CERC serves, 17 out of the 24 sessions were offered in both Spanish and English.

Serving a predominantly underserved population in the Bronx, the multidisciplinary team of CERC clinicians provides diagnostic, therapeutic and support services for patients with a variety of developmental disabilities. These include intellectual disabilities, autism, language disorders, learning disabilities, cerebral palsy, other neuromuscular disorders and behavioral problems.

The workshop approach was piloted last year, with a focus on parents whose children receive services from CERC's Infant Toddler Team. "We thought a forum like the workshop would be helpful to parents and other caregivers, to provide them with relevant information, tools and techniques that can be carried over to their homes and communities," explained Tammy Fried, a social worker at CERC.

Ms. Fried organized the initial event along with speech language pathologists Noor Al Radi and Alexandra Nussbaum.

"We wanted to empower parents to be more effective advocates for their children and to feel better equipped navigating their child's daily needs," explained Ms. Al Radi.

"We received such great feedback from parents and clinicians following last year's workshop that we decided to expand it to include all CERC units," said Ms. Nussbaum. "We also added extra sessions, which were derived from the feedback we'd received." With the expansion of the workshop, social worker Diana Rodriguez joined the organizing committee.

For parents whose child has a developmental delay, it can be challenging to deal with aspects of daily living, such as getting dressed and socializing, which most of us take for granted. "Parents see their child playing alone at the playground or being called names, and that can be hard for them," said Ms. Fried.

Donnette Grant—whose nine year-old son Jude was diagnosed with autism at 16 months of age—has experienced this. She was attending the workshop for the second time. "We get looks from other parents, like 'what is wrong with your kid?' The information at this workshop, and the chance to connect with others who experience similar difficulties, is so helpful."

Led by CERC clinicians who had volunteered their time, the workshop sessions allowed participants to ask questions. "I heard some of the questions from other mothers and thought, I used to be there," said Ms. Grant. "The workshop reminds me I am never alone."

Shirley Garcia, whose 10-year-old son Nikolas is on the autism spectrum and has spina bifida, agreed. "The event brings awareness, and it's good to learn tips from experts and from other parents that you can apply to everyday life."

Navigating the jargon-filled maze of accessing services such as educational placements, and community and recreational programs, is an intimidating, nearly constant uphill battle. "During meetings, such as individualized education programs, where parents learn what goals, objectives and services have been identified for their child,  'assumed knowledge' can be a problem. Because these meetings can be daunting for parents, we included sessions about accessing community services and navigating school and related services to help parents feel more empowered—and to be sure they truly have the knowledge they need," explained Ms. Al Radi.

During lunch, CERC developmental pediatricians, physical and occupational therapists, psychologists, speech and language pathologists, special educators and social workers were available for one-on-one question and answer sessions. "We wanted parents and clinicians to have the opportunity for an open dialogue addressing their specific questions since, in the clinical setting, we often lack time for lengthier discussions," said Ms. Al Radi.

Approximately 70 parents and caregivers attended for the free workshop, which was open only to individuals whose children receive services through CERC. "We heard from many people and organizations outside of CERC who would have liked to attend this year," said Ms. Al Radi. "In the future, we'd like to be able to include all members of the community, since it's clear that there is an information gap that needs to be closed"

To conclude the daylong event, Dr. Lisa Shulman, associate professor of clinical pediatrics and director of the Infant Toddler Team, delivered a keynote address, "It Takes A City: Raising a Child with a Developmental Disability." A frequent contributor to Einstein's The Doctor's Tablet blog, on topics related to parenting children with disabilities, Dr. Shulman's talk emphasized the need for resilience, empowerment and celebrating milestones whenever they occur.

"It's helpful to focus on positives," she said. "They can help you in dealing with the more difficult challenges."

A workshop in session
A workshop in session
A parent speaks with Dr. Mayra Alvarez during the one-on-one Q&A session
A parent speaks with Dr. Mayra Alvarez during the one-on-one Q&A session
Dr. Lisa Shulman offered the event’s keynote address
Dr. Lisa Shulman offered the event’s keynote address
 

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