Permission to talk about the hard stuff, with Amanda Griffith-Atkins

Amanda Griffith-Atkins, MS, LMFT answers our questions about all that comes with raising a child with disabilities

Written by: Rachel Bennett

CVI Now hosted a live virtual event with Amanda Griffith-Atkins about all that comes with raising a child with disabilities in a society that is not fully accessible nor inclusive. 

Amanda is a licensed marriage and family therapist whose clinical background, combined with her own experience as the mother of a disabled child, has given her a unique and refreshing perspective on parenting. She is the founder of Amanda Atkins Counseling Group in the Lincoln Square neighborhood in Chicago. Many of you may follow her incredible Instagram account (@amanda.griffith.atkins) that is full-on truth about all that we experience as disability parents. 

Watch or listen to the video! Below is a Q&A with highlights from the incredible conversation with Amanda. 

Q&A with Amanda Griffith-Atkins

Why is it so important to make room to talk about the hard stuff?

As I was reading the questions from CVI parents, I was just so struck by the weight on our shoulders as parents and just the amount of emotion that we experience on a day-to-day basis. 

I am a mom to a child with a disability. I have an almost 13-year-old with Prader Willi Syndrome, which is a rare genetic syndrome that impacts about one in 20,000 people. It took me a long time for me to be able to confidently say I’m a parent to a child with a disability. But since I’ve started talking about it, it’s been really important for me to speak my truth about it, which for me is allowing space for the good and the bad.

As parents of kids with disabilities, we feel like we have to be that full advocate parent, where we always have a smile on our faces. We’ve all heard the sayings, right? God only gives special kids to special parents. I want to crush all of those things and be like some days are really freaking hard and I can’t do it. 

I feel like the more we talk about this, the more that within our community we’re being honest and vulnerable about the hard stuff, the more encouraged and supported that we feel. 

This has become like a bit of a life mission for me is to just allow space for the hard stuff and the really upsetting truths that some of us didn’t ask to be in this position. We love our kids with all of our hearts, but it’s also totally changed our lives in ways that we could have never predicted. 

We have to allow space for the hard stuff and the really upsetting truths. We love our kids with all of our hearts, but it’s also totally changed our lives in ways that we could have never predicted. 

How do we support the mental health of our kids with CVI? 

There’s no such thing as a bad emotion. We need to provide space to process emotions.

How can we teach our kids that as they grow up they will need to be their own advocates and set boundaries?

How do we balance helping versus fostering independence in daily living? 

I shifted my goal from independence to safety because safety feels more achievable to me, whereas independence feels like this goal that’s out of my control.

Let’s talk about the siblings of our kids with disabilities. What do they endure and how can we be mindful of what they need?

How do we nurture marriages and relationships when it’s constant from wake to sleep?

Having a child with a disability is beyond life-changing for a marriage and we are in no way prepared for this level of responsibility.

How can I maintain my personal identity while still filling the needs of multiple family roles, including disability parenting?

How do I deal with the anxiety of trying to balance everything?

How do we deal with our grief?

We need to totally dispel this myth that if we’re upset and sad about our child’s disability, it means that we don’t love them. That is not true. You’re allowed to grieve your child’s diagnosis and still love them more than anything in the world. 

How do we empower ourselves as we are dealing with compounding trauma?

Once you recognize the trauma triggers, ask how can I take care of myself in the moment? How can I be loving and gracious to myself?

What are you most hopeful for?

Discussions like this make me feel so hopeful. Giving people permission to talk about the hard stuff. The more we talk about it, the less alone we feel. When my son was a baby, people were not talking about the hard stuff. They just weren’t. I felt so much pressure to always wear the orange ribbon for Prader Willi Syndrome. I don’t always want to wear the ribbon. So giving myself permission to not wear the ribbon and name that it is really bad sometimes. To acknowledge that we are really struggling and just own it, but also know that I’m going to be okay. 

The more we name that this is hard, we can free it up to look at the good stuff too. But if those emotions are already there and we’re never talking about them, we’re all just internalizing it for the rest of our lives. And life’s too short for that. 

Join Amanda on Instagram @amanda.griffith.atkins and be a part of her affirming community. Learn more about Amanda at her website:

Want more real talk? Check out Let’s Talk about Grief, with Amanda Griffith-Atkins, where she decodes the many emotions of CVI parenting, focusing on grief and self-compassion.