Recently at the Children’s Evaluation and Rehabilitation Center (CERC), a group of social workers and speech-language pathologists, including Noor Al Radi MS. CCC-SLP, Tammy Fried LCSW, Diana Rodriguez, LMSW, and Alexandra Nussbaum, MS CCC-SLP, held the annual CERC Parent Workshop to help caregivers of children with disabilities learn how to navigate the complex mazes that are the health and education systems.
When your child has a diagnosis of a developmental disability, the phrase “advocacy” gets thrown around a lot, and often weighs heavily upon the parents’ shoulders. The reality is that part of effective advocacy comes from collaboration between various people who are all critical in the child’s life. The goal of the workshop is to foster a team culture to better support the kids and their families.
At the CERC Parent workshop providers lead sessions on subjects relevant to the changing needs of the community, brought to our attention by parents and the realities of their everyday lives. Sessions, led by speech therapists, social workers, psychologists and developmental pediatricians, provide current and practical information, and the tools needed to navigate, advocate and approach daily challenges related to having a child with a developmental disability.
We share information about accessing services, family issues, therapeutic services/interventions and general diagnostic information. Additionally, we provide parents with the opportunity to lead sessions and meet with clinicians of all disciplines to ask individualized questions.
Through these discussions a more active collaboration has begun to emerge between clinicians and parents at our clinic. From this joint effort, key themes have emerged as critical approaches to being an effective advocate:
There is more than one expert in a child’s life.
Parents know their child’s everyday needs, motivations and anxieties; they are the experts on their own child. This may seem obvious, but it is a reality that is often minimized. When faced with an issue related to a child’s disability, parents seek out a professional because they are the “certified expert,” but professionals also rely on the parent’s input to fill in the blanks. Combining the professionals’ and parents’ expertise paves the way for a personalized approach in a system that often resorts to a one-size fits all model.
Being present is essential.
Being present allows the parent to better educate themselves and others on their child’s needs. Many parents are already doing this, for example going to their child’s school gives the parent a sense of the routines, general structure and flow of the day. Once again, parents know their child best and having a sense of the actual space puts them in a better position to tailor it to be the most supportive environment for their son or daughter. Knowing the environment also helps parents process the information being relayed by the teacher or therapist, which in turn allows for active collaboration and problem solving.
Don’t be afraid to ask questions.
For medical professionals, parents’ questions are both an opportunity to learn more about the child as well as a window into the parents’ understanding and point of view. These active dialogues help form and inform the parent’s support teams — clinicians can help get answers, direct them to the appropriate resources, and assist in advocating for their child’s rights and needs. We encourage you to ask anything and everything. Questions start conversations. By talking to others, parents are able to break down the jargon that comes with discussing disabilities. Knowing these terms can help open doors and prepares parents to actively participate in meetings, appointments and therapies, without feeling overwhelmed by all the terminologies and catch phrases.
Connect.
At the CERC Parent Workshop parents have the opportunity to voice concerns, share their sense of isolation - of having a ‘different’ child and feeling ‘different’ within their communities. By connecting with others and sharing similar experiences, that parent’s singular narrative becomes a part of a collective voice that empowers and amplifies influence. In doing this, parents are also building both a social and practical network of support where information and knowledge is exchanged. This has been one of the most meaningful outcomes of the workshop – seeing a group of parents who entered the first workshop as strangers; now sit supportively together as a group and as friends.
Collaboration is a catch-all term that is sometimes hard to define, as is advocacy. Defining both is an ongoing challenge that has to be individualized to you, the parent, and your family’s needs. As we all strive to collaborate more effectively, we urge you to remember these key themes: recognize expertise, be present, ask questions, and create supportive networks.
