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.]

 

 

 

 

 

 

 

 

 

SCAN Staff Book Picks: Winter 2017

Ready to read in 2017? SCAN staff members are!

We’ve come up with a fresh list of books to recommend for child welfare professionals, advocates and parents you know. What are you reading this winter? We’d love to hear your suggestions in the comments below!

012017_booklists

  • “The Resilient Parent” by Mantu Joshi is a collection of essays meant to provide emotional, spiritual and practical guidance for parents of differently-abled children. Using his own experience as a parent of children with special needs, Joshi offers short chapters that can be read in under 5 minutes, each ending with reflectiosn for parents to think about in their own life and family.
  • “Socially Strong, Emotionally Secure” by Nefertiti Bruce and Karen B. Cairone, was published in 2011 but is worth a permanent spot on your bookshelf! It provides 50 activities to help kids age 3-8 build resiliency, and is useful for professionals and parents alike.
  • “A Volcano in My Tummy” by Eliane Whitehouse and Warwick Pudney, offers excellent, easy-to-understand skills for adults when helping children (age 6-13) deal with anger management. From teaching them how to communicate their anger to addressing violent behaviors, it can help build awareness, creativity and hands-on tools for kids to manage anger issues.
  • “I Am Jazz” by Jessica Herthel explores the experience of Jazz Jennings, a real-life transgender child. We talk a lot at SCAN about books that build resiliency for children, and what a great tool this book can be for kids and adults a like, exploring a challenging subject in a way that builds understanding and connection.

A Special Kind of Support: Helping Parents of Children with Special Needs

no-description-1577998It’s a topic that has come up often in our Allies in Prevention Coalition
Meetings: How do parenting topics and resources apply to those raising children with
special needs?
In many cases, families are all facing the same struggles —
how to discipline, deal with sibling rivalry, find childcare — but at the same
time there are unique challenges that deserve special attention and support.

This fall, SCAN worked with community partners to develop four new fact
sheets focused on parents raising children with special needs:

We hope to continue to develop materials for this parenting community (including translating these first four fact sheets into Spanish this spring), and we encourage parents to reach out for support from organizations such as:

For school support, also reference:

  • Virginia Association of Independent Specialized Education Facilities (VAISEF) – www.vaisef.org
  • Maryland Association of Nonpublic Special Education Facilities (MANSEF) – www.mansef.org
  • DC Association for Special Education (DCASE) – www.dcase.org
  • National Association of Private Special Education Centers (NAPSEC) – www.napsec.org
  • Definitely Parent Educational Advocacy Training Center (PEATC) – www.peatc.org

What other resources can we share to support this special groups of parents? Please share your thoughts in the comments below!

SCAN