10 tips to parents of children with OI
Unsolicited advice for non-disabled parents of disabled children
By Haley Brown, artist from the US
Unsolicited parenting advice from someone who isn’t even a parent is…everyone’s favourite thing, right? I know, I know, it can be really rude and annoying. But I wrote this from a place of deep love – for disabled kids AND our parents. For all kids and parents. SO here we go!
Before I get going on my unsolicited advice, you might be like, ‘ok Haley, but who the heck are you and what are your credentials for speaking on this topic?’ And that would be entirely reasonable. I am not a child psychologist. I’m an OI (type V) adult who’s worked with children for 17 years, and I have non-disabled parents. I’m 30 years old.
Ok let’s start with 10 points in no particular order…
1. Stop praising your disabled kid (directly or to other people) for being positive!
Especially around medical procedures or painful experiences. While it may seem harmless to you, it trains your kid to suppress their extremely valid responses to pain for other people’s comfort. Your kid should get to feel however they feel about whatever medical trauma they’re going through. Validate all feelings that come up for them instead of constantly asking them to stay positive or be brave.
Anecdote: a kiddo I was babysitting for cut his finger open when we were doing a project, and he was absolutely freaking out. After we handled it and he was feeling better, I said to him “I’m so glad you’re feeling better. You were super brave.” He said: “Because I didn’t cry… that much?” (He cried a lot). I said “No! It’s still brave if you cry! You were brave for getting through it, and for sharing how you felt about it. You were brave for crying. It was scary and it makes sense to cry when you’re scared.”
2. Protect your kid from other people relentlessly praising them for their positivity!
I have a lot to say about my own experiences with strangers, acquaintances, and well-meaning adults in my life praising me teary-eyed for being so inspiring and positive when I was actually in a lot of emotional distress. It created a cognitive dissonance that I’m still working though as an adult. Along these lines, listen to the late OIer Stella Young’s talk “I’m not your inspiration, thank you very much” (see below). Allow your kid the dignity of being a complex human being with lots of different feelings, and also the dignity of being ordinary.
3. Think twice before posting on social media!
I see a lot of social media posts in the inspiration realm, where parents post pictures of their disabled kid in the hospital with an inspiring caption. I get that this might help you process your feelings, but ask yourself how it would feel to be in your kid’s position. How would it feel if your body was photographed at its most vulnerable, and your trauma was posted on social media for all to comment on?
Having a kid go through medical procedures is a traumatic experience for grown-ups too, and sharing may be cathartic for you. I get that! I recommend sharing with a private text thread of close friends and family, instead of… literally everyone.
4. Seek support from peers or professionals!
You, grown-up, are going through the ongoing traumatizing experience of having to fight for your kid in the medical realm and coordinate their care. It’s a lot. Your feelings are valid too! AND…I truly believe that it will serve both yours and your kid’s well-being for you to process that in therapy if you have access to that and/or with peer support. It should be a top priority.
5. Listen to diverse adults with disabilities!
Do you have disabled adults in your life? Do you have disabled friends? Do you follow disabled activists and organizers on social media? Do you and your kids watch shows and movies with disabled characters played by disabled actors, read books by disabled authors? Do the disabled people in your life span across other intersections of identity? Do you hear from BIPOC, queer, and poor disabled folks, for example? Do you recognize that disability intersects with other facets of identity in complex ways? Do the advocacy groups, charities and organizations you follow and participate in have leadership from disabled people themselves? If so, that’s amazing! If no, ask why not and seek out those kind of groups, relationships, and content!
6. Value disabled adults in your own life!
Some non-disabled grown-ups of disabled kiddos do their best to find a disabled ‘mentor’ for their kid. Which is an amazing start at getting them the positive representation they desperately need! But, unfortunately, if you don’t model that you cherish and value disabled adults in your own life, that mentorship is likely to fall flat once your kid starts to internalize the ableism that the culture is constantly throwing at them.
7. Work on your own ableism!
Examine and work to uproot your own Ableism. We all have it. Googling “Disability Justice” might be a good place to start, especially if all of this is new to you.
8. Recognize that pain can be hidden!
Recognize that your kid might be experiencing physical pain even if they aren’t naming it. I think a lot of my tantrums and my resistance to bedtime (which are also just normal for all kids) involved the additional layer of physical pain and not wanting to be alone with that.
9. Resist body shaming in all forms!
Fiercely resist body-shaming in all forms, and start with yourself! Model what it is like to heal your own body-shame and develop a respectful and loving relationship with your own body. Model that all bodies are different, all bodies have needs, all bodies have limits, all bodies are worthy.
10. Help your kid develop curiosity, joy within, and agency around their own body!
Help them name what is happening in their body in positive moments as well as more painful/negative ones. Express to them that their body is theirs. Practice consent! When consent is breached (as it almost always is in medical settings with children), honor the trauma of that.
If you read to the end… congratulations! Even just having the courage to consider advice about your parenting from a disabled adult you don’t know is a big deal. And I don’t mean that in a condescending way. I get that parenting is the hardest job in the world, and I know that you love your kid so fiercely.