Advocacy + Empathy + Connection: Serving Families with Special Needs

Since the launch of the Parenting Can Be Tough campaign, we continue to consider this theme through the eyes of different parents in our communities. The challenges of parenting can be universal—consider topics like discipline, behavior, stress management—but they can also be unique for different groups of families. This month, we invited a panel of experts to our Allies in Prevention Coalition meeting to help us consider the distinct challenges and needs of parents and children with special needs.

The group included Cheryl Johnson from NAMI, as well as Erin Croyle, Amel Ibrahim and Irene Schmalz from the Center for Family Involvement Partnership for People with Disabilities. They shared both personal and professional experiences from a wide range of parenting perspectives–including having or raising children with autism, hearing loss, refugee status, mental health diagnoses, and many more circumstances that might fall under “special needs”. And yet, there was a common refrain for all instances when it came to best serving these parents:

1. ADVOCATE FOR THESE FAMILIES. And help parents learn how to advocate for themselves. It can be challenging for parents to understand how their family will fit into an existing system, noted Amel. “How will I get social services for my son with autism?,” she asked herself when they first came to the U.S. There was no simple answer. The same goes for school systems, medical systems, and anywhere else a family will engage with established procedures organizations. (Facing language, communication and knowledge barriers can exacerbate this problem.) Often, parents need to know they even have rights or the opportunity to ask questions.“Press the systems you interact with,” encouraged Erin. “Tell parents to push. Help them advocate for their kids and themselves.”

2. CONSIDER THE IMPACT ON PARENTS. Practice empathy—ask a parent to share how their family’s specific needs have affected them, on a personal level.“It’s easy to make assumptions about a parent,” cautioned Irene, “but that’s not always the whole truth.” Parents need someone whom they can talk to openly about raw emotions (anger, jealousy, fear, exhaustion) associated with their situation. It’s critical that they learn how to process negative emotions associated with their children and family.“As a parent of a child with a disability, it can feel like being hit by a bus,” shared Erin. “It’s good to be honest about the emotions that come with it. It’s always hard. Any sense of normalcy is gone…It affects every single part of your life. Marriage. Family. School. It even affects having a coffee.”While all parents may have struggles navigating systems, special needs can make navigation much more complicated. Panelists noted that having other adults to talk to—who can truly relate to their circumstances—can be invaluable. Which brings us to…

3. BUILD CONNECTIONS FOR PARENTS. When trusting relationships are built, it can open up doors for families. While you can provide empathy and some support depending on your role in a family’s life, help them find other sources of information and support. Panelists and AIPC members mentioned the following helpful resources as a great place to start:

“The only label a kid should have is their name,” noted Irene. And yet, we know that is not always the case in the systems we navigate. But it can be helpful to offer a gentle reminder to parents from time to time. A diagnosis—or even just a label—living with some special set of circumstances—can certainly change a family’s life. But parents should always be guided and encouraged in simply enjoying their child.

“Sometimes,” shared Erin, “the best thing a child can have is a parent who is happy and enjoying them.”

 

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[As you share resources, we also encourage you to check out SCAN’s Parent Resource Center for a series of topics related to special needs including: Creating Resilient Families for Children with Special NeedsSibling Relationships for Children with Special Needs; Preventing Child Sexual Abuse of Children with Special Needs; and Choosing Caregivers for Children with Special Needs.]