How to advocate for your child with special needs and get the support you need as a parent

For parents of children with special needs, speaking on their behalf—advocating for your child—may be a lifelong necessity.

A new diagnosis can be scary. But, it’s important to take a deep breath and know: you’re not alone. There are other parents, experts and community members who can help ensure your voice is heard and your child’s individual needs are met.. 

Advocating for your child means a lot of things. It can include researching laws, finding helpful support resources, and even the day-to-day of connecting with your child’s caregiver to ensure you’re working as a team.

At Vivvi, we are often part of this caregiving community, and are fortunate to have many experts in our village that can help you navigate advocacy and get the support you need for your child and yourself.

There are Many Paths Forward

When faced with a challenge, most of us look for “the right answer.” But in life, often there isn’t one right answer. In fact, there are often many paths forward, according to Dr. Kelly Fradin, pediatrician, mother of two, and author of Advanced Parenting: Advice for Helping Kids Through Diagnoses, Differences, and Mental Health Challenges.

“I find that it’s the time before you have a diagnosis—or you’ve identified resources or before you have a team—that is the most stressful,” Dr. Fradin told Vivvi. “The truth of the matter is that it’s not always certain. There’s not always one right answer.”

Tips for Advocating for your Child

1. Identify the experts in your child’s life
   
   Dr. Fradin emphasizes the importance of identifying who is truly the expert in your child’s life. Try stepping away from the situation and looking at the issue from the outside. Are you the best person to make decisions for your child, or should you tag in an expert or two? There is no shame in bringing in the professionals.
   
   “You have to think about what you bring to the challenge in terms of: Do I know enough information to make this decision? Am I the right person to make this decision or should I look for support from the people who know my children best?” Dr. Fradin said.
   
   If you’ve gotten to a place where you’ve done all the research, made all of the pros and cons lists, but are still struggling to move forward or make a decision, it may be time to turn to other experts in your child’s life for support.
   
   Other experts may include: your child’s physician, educator, or a mentor parent with more experience in the field of your child’s diagnosis. Finding experts and leaning into their knowledge is key in advocating for your child.
2. Include your child in conversations.
   
   Include your child in conversations about their special need or diagnosis and allow them the opportunity to advocate for themselves, too, as it becomes age-appropriate.
   
   The question isn’t when to include your child in conversations about their diagnosis, explained Rebecca Schrag Hershberg, PhD, clinical psychologist, parenting coach and author of The Tantrum Survival Guide told Vivvi, but instead how you want to share information in an age-appropriate way.
   
   “Generally speaking, kids know something is wrong even if no one tells them because they can read your body language and they can see the stress and they see the appointments,” Dr. Hershberg said. “It’s better for parents to give the basic message: there’s something that we need help with, we’re going to get help, and we’re going to figure it out together. And that is often enough.”
   
   Making heavy topics easily digestible for 2- and 4-year-olds can feel intimidating. Dr. Fradin recommends taking time to talk with your child’s caregivers about how to share medical information in a way your child can actually grapple with.
   
   And It doesn’t have to be a big, sit-down formal meeting. In fact, Dr. Hershberg says it probably shouldn’t be. Instead, make conversations about your child’s diagnosis part of everyday life.
3. Explain the strengths of your child’s diagnosis
   
   For parents of children with diagnoses in the mental health realm, Dr. Hershberg suggests framing the conversation around your child’s strengths, while still acknowledging the challenges.
   
   “There’s always a way to spin what’s going on with a child as both a strength and a challenge,” Dr. Hershberg said. “When there’s something like ADHD or anxiety/depression, you can say: here’s this amazing thing about your brain. You have the ability to feel so much. You hear a piece of music and you can be moved to tears, like what a beautiful heart you have—and sometimes that’s hard because through the day there’s a lot of things that cause you to have deep feelings.”
4. Marginalized groups find support within their community
   
   For parents with less resources or marginalized voices, the painful reality is that it can feel even harder to get support for your child with special needs.
   
   Finding agencies and organizations that support people within your community is a great way to start connecting with other parents who have paved paths of support for their children, according to Venus Mahmoodi, PhD, clinical psychologist, researcher, professor and advocate for women’s health.
   
   “It’s particularly challenging if you don’t have as many resources as others,” Dr. Mahmoodi told Vivvi. “Coming from marginalized backgrounds or being a person of color there’s often a lot of biases and systemic racism that can get in the way of accessing the types of services and care that you or your children need.”
5. Know you can always change your mind.
   
   Making decisions about how to support your child in their diagnosis can feel very scary. But there’s power in knowing you can change your mind—and your course of action—when it comes to supporting your child and their special need, Dr. Fradin said.
   
   “You’re going to make a choice and that feels hard, but then you can also say, ‘I’m going to try this for two months and then I’m going to re-evaluate and I can change my mind’,” Dr. Fradin said.
   
   Changing course when things aren’t working in your child’s best interest is an important part of advocating for them.

Get more tips on How to Advocate for your Child from our Vivvi webinar featuring Dr. Fradin, Dr. Hershberg and Dr. Mahmoodi.