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?
- If you want your kid to have good mental health and healthy relationships with their emotions, you have to model that yourself with your own self-care and your own mental health, and have an environment in your home that fosters it.
- There’s no such thing as a bad emotion. We need to provide space to process emotions.
- So let’s say your child comes home from school today and is feeling super mad. So our question is, how can we foster healthy mental health for our kids? The first thing you’re gonna say is “oh, my gosh, I can tell you’re mad? I can tell by your face. What happened today?” We’re not dismissing the emotion. We’re not trying to get them to numb it by going to watch TV or eating a snack.
- On the flip side, you model your own processing of emotions. For example, “Mom is really mad right now. I’ve just had something come up. And I just need a minute to catch my breath. If you guys can just go in there. Let me calm down. I’m not feeling very good right now.”
- Our kids pick up on all these implicit messages about what emotions are okay and what emotions are not okay.
- Build a trusted circle, so it’s not just us trying to navigate their mental health, but there are other people we trust involved—a therapist, a teacher, and so on. Talk about and share what disabled advocates are saying and doing. Give them role models that look like them, who know what they’re feeling.
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?
- Model boundaries and consent at home. Start by modeling permission and consent during daily routines. If we show how we respect their boundaries, the more likely they are to go out in the world and set boundaries because it happened at home.
- Take the process of getting dressed, how can we ask for permission and consent to help with this process? “Hey, can I help you get dressed right now?” Instead of just putting on their pants. We don’t always feel like we have time for that, but it is important as we’re modeling boundaries in the home. Perhaps ask, “Do you want to wear your sweater today?” Or “Okay, can you go in and pick out what shirt you want to wear tomorrow.” Try to model having a voice. Start with simple things.
- We have to be mindful of what we’re posting online. That’s another simple boundary thing. If your kids are old enough to recognize themselves on the internet, you might want to say, “Hey, I’m gonna post this picture. Are you okay with it? Here’s what it looks like. What do you think about this?”
- These are little examples of ways that we were getting our children to start taking ownership over their own sense of self and what they’re okay with and not okay with.
- Model boundaries and consent at medical or therapy appointments. If you’re talking to a teacher, therapist, or doctor and your kid is with you, what are you sharing? And are you turning toward your kids asking if they mind if you tell the story about last week? Instead of bulldozing our kids, we’re turning towards them. And we’re actually getting their consent in the process.
How do we balance helping versus fostering independence in daily living?
- You have to ask yourself, what is most important to you and your kid? What are your goals in terms of independence? The answer is going to be different for everyone and we can’t be influenced by what we should think the right answer is.
- My son is almost 13 and for a while my mindset was I need to push him to be as independent as possible. All of our kids are in such different places, so I’m just speaking for myself. I then 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. Safety can lead to independence. At this point, I don’t care if he lives alone. I want him to be safe and happy. If he’s in a group home with his buddies, has some sort of job, and is happy and safe, I would be beyond happy.
- Speaking to that balance of help versus fostering independence, every parent is asking this question, but as parents of kids with disabilities, there is just so much more at stake. Our kid’s independence hinges on us and our energy day in and day out. I just can’t every day. From day-to-day, you have to gauge: What is my ability to engage in his battle today? If you’re capable of it, you can stick to your routine and encourage your kid to do the thing, and really foster independence. But if you’re just depleted, then you’ve got to let go of that guilt, and just be like I don’t have it in me today. You are worthy no matter what.
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?
- There has been research done on siblings and how they are impacted by having a sibling with a disability. Common feelings are jealousy, they feel they are left in the dark a lot, and their sibling gets all the attention. They feel like they don’t have all the information and they don’t know what’s going on with their sibling. They are worried about them.
- There are things as parents we can be mindful of. We need to model that all emotions are allowed because our nondisabled kids are often feeling like they don’t want to add to our burden. They see that mom is so stressed out and if they got in trouble at school, the last thing they’re going to do is come home and tell mom. So maybe they deal with it on their own.
- So we have to be making space for our nondisabled kids to have feelings, and to be mad about having a sibling with a disability, which is really hard. What message are we sending to our nondisabled kids about our availability and being able to take on more burden?
- But here’s the other side to this: Our kids are learning to deal with people who are different from them. There’s such a positive side to this that makes our kids empathic and gentle.
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.
- It’s about scheduled time: date night in, time for closeness. As parents of complex kids, we are parenting, coordinating medical care and educational teams, managing sensory needs, working, and managing our own health. These are at least three full-time jobs. We have to schedule time for our relationship.
- Couples therapy. You can do virtual couples therapy and it’s just an hour every week or every other week where you’re actually connecting.
- Do a weekly 30-minute (max) state of the union where you share what’s going on in the week, what’s on your mind, what logistics you’re thinking about, and what you’re struggling with. It shockingly connecting.
- Know that partners will grieve differently. You might be somebody who needs to talk about your child’s disability and your struggles with dealing with the grief, and your partner might not want to talk about it. You need to learn what your partner needs and they need to learn about what you need.
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?
- I feel like for so many of us when we became parents to a child with a disability, it overtook our identity and we lost sight of who we used to be.
- If I could have one wish for all of us, it would be that we were able to connect with what brings us joy, and we’re able to find time for it and not feel like we’ve lost ourselves. Without this, then comes resentment and burnout.
- Think about what brings you joy and what makes you the happiest, and when you can find moments to do that. Carve out this time for you. If your answer is I don’t know what brings me joy, then you definitely have some work to do—because that does mean that you have lost that spark. Dig deeper and find what brings you joy.
How do I deal with the anxiety of trying to balance everything?
- What are you currently doing to balance your anxiety? Let’s think about the tools for anxiety: therapy, meditation, medication, exercise, and community support.
- We have been through so much trauma starting from, for some of us, before day one of our child’s birth. That trauma changes our brain and changes the way that we perceive threats in the world. So your brain might need a little extra help with managing anxiety. As you manage your child’s medical care, you might be feeling like you don’t want to deal with any more doctors or therapists. But you’re worth it. You deserved care and professional care. We are worth it.
How do we deal with our grief?
- I feel like so many people probably could have asked some form of this: I’m still really sad and really mad about what my child is dealing with. It’s every day.
- We see our kids suffer, but we’re also so proud of who they are. I am proud of my son’s disability in the sense that he is managing it and just living his life. He’s such a cool kid. But I also watch him suffer and watch him have to deal with some of the stuff he has to deal with. It is grief. It is devastating. I hate it. I hate this for him.
- We need to be honest about all the small details. I posted once about how while other parents were like tightening their kids’ soccer cleats, I was trying to get my son to take his first steps. That’s where I was in the world. I am so different from every other friend who’s raising kids. I think sometimes about those differences and naming that grief really does help us process it.
- When you give the grief space to breathe, it can feel overwhelming. I would encourage you to find a friend or a therapist, write about it, and just give yourself space to talk about it.
- 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.
- So many of us still wonder if it’s our fault. It’s not your fault. If you could go back and do anything differently you would have, but we don’t know what we don’t know. Getting stuck in that blame game is not helpful for your joy and it’s not helpful for your piece.
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?
- Realize and acknowledge the traumatic things. What is it that triggers you? Can you identify what is it that’s upsetting to you? And then trace it back to why. That’s the first step.
- Anytime I go to the Children’s Hospital for my son and use the hand soap, it brings back all the trauma from the NICU. It’s just so upsetting for me still to this day. So I bring my own hand sanitizer, something that smells good. I talk more about my medical anxiety on The Rare Life podcast.
- When we recognize the trauma and develop some understanding around where it’s coming from, then we just simply have to have compassion for ourselves. Of course, I feel anxiety when this happens.
- Once you recognize the trauma triggers, ask how can I take care of myself in the moment? What do I need in the moment? How can I be loving and gracious to myself? How can I give myself space to breathe after a really hard IEP meeting or medical appointment before going back to life?
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: amandagriffithatkins.com.
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.